The Global Genomics Nursing Alliance
Poster Collection January 2017
The G2NA Poster Collection Introduction In January 2017, twenty nine people from across the world gathered at the Wellcome Genome Campus Conference Centre, Cambridge UK, to consider how best to accelerate the integration of genomics into nursing practice. Participants were selected on the basis of their knowledge, expertise and/or global leadership in nursing, healthcare, policy and genomics. Over the course of three days, they discussed issues, challenges and priorities to transform nursing practice, education and policy to be cognisant of the implications of genomic technologies for individuals and societies. In preparation for the meeting and to facilitate understanding of the context for nursing, healthcare and genomics in the different countries and organisations, participants were invited to present posters, to a given template. Posters from nineteen countries and two organisations were presented in total. They are collated in the pages following.
G2NA Posters on display at the Wellcome Genome Campus Conference Centre The countries Australia Brazil Canada China (Special Administrative Region of Hong Kong) Colombia Germany Israel Japan Mexico Netherlands Nigeria Norway Pakistan South Africa Switzerland Taiwan Turkey United Kingdom United States of America
Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice
A Country representative Australia Professor John Daly, Dean, Faculty of Health, UTS and Professor Jane Maguire, Professor of Nursing, Faculty of Health, UTS
Background I Background II Nursing Genetics and My Country Healthcare in my country The Nursing Role genomics in Australia has a population of ‘The healthcare system is complex. Nurses are regulated by the approx. 24 million. The majority of Public health services are provided Nursing and Midwifery Board of the Australian population is of by State and territory Health Australia (NMBA) which is located healthcare I Specialised European ancestry, and Services (they manage Public in the Australia Health Practitioner Currently Australian healthcare predominantly self- reports as Hospitals), and the Federal Regulation Agency (AHPRA). Caucasian (white) .Aboriginal and Government. The Federal Courses leading to registration as includes specialist genomics Torres Strait Islanders comprise Governments funding contribution a nurse much be approved by the services in urban regions but these about 3% of the national includes Medicare, a universal Australian Nursing and Midwifery are a rarity in rural settings. population. Australia is culturally public health insurance scheme. Accreditation Council and the Services exist for patients and and linguistically diverse. ‘At 30 This includes free treatment for NMBA. Nurses are integral across their families, and offer genetic June 2015, 28.2% of the estimated public patients in public hospitals. all levels of health care services. In testing and genetic counselling for resident population (ERP) was Citizens can be covered by 2015 Australia had 300,524 RN’s cancers and monogenic disease. born overseas (6.7 million Medicare or a combination of and 59,484 EN’s on the national Services may be offered on a persons)(ABS,2016).’ Persons born Medicare and Private Health register. home visit or in a specialised
in the United Kingdom continued Insurance. Primary, secondary and centre. These are usually attached to be the largest group of tertiary care services are Education and Training to local area districts and staffed overseas-born residents, provided’. Undergraduate nursing education by a multidisciplinary team, led by accounting for 5.1% of Australia’s is conducted in universities a medical geneticist and may total population at 30 June 2015. Source: (prepares RNs)> Programs are of 3 include specialist nurses, often in This was followed by persons born http://www.aihw.gov.au/australias years duration full time with genetic counselling roles. in New Zealand (2.6%), China -health/2014/health-system/. integrated clinical practica. (2.0%), India (1.8%) and the Graduates are prepared to work in Philippines and Vietnam (1.0%)’ a range of settings except (ABS,2016). midwifery.
Genetics and Policy Policy Resources genomics in Initiatives I Initiatives II
healthcare II Release of a draft National Health In 2016, over 25 million was Various links to information can Mainstream services Genomics Policy Framework by the allocated to the Murdoch Children’s be found at these websites: Requests for genetic testing are Australian Government is imminent. Research Institute to support this made by specialist medical staff. The In early 2016, the Australian Health endeavour in a single, NHMRC majority of pathology services can Minister’s Advisory Council directed multidisciplinary, nationally focused grant. This led to formation of the collect samples for genetic testing the Commonwealth, in consultation Australian Genomics Health Australian Genomics Health Alliance but processing will be conducted at with states and territories, to Alliance (https://www.australiangenomics.o develop a nationally consistent and specialised central centres. rg.au/news-events/events/?y=2016, strategic approach to integrating Professional organisations including 50 partners with over 100 genomics into the health system. include: investigators from multiple In 2015 NHMRC opened a Targeted academic and research institutions Human Genetics Society of Call for Research into Preparing representing every state and Australasia Australia for the Genomics territory. In 2016, The Garvan Revolution in Health Care (Genomics Institute of Medical Research, The Royal College of Pathologists TCR) with the aims to ‘support Sydney hosted its first Annual of Australasia research directed towards Australian Clinical Genomics Symposium to highlight best demonstrating how the discovery practice and challenges facing the and application of genomic data in implementation of genomics in one or more human diseases clinical practice. impacts the care of patients with that/those disease, and identify the economic and policy impacts of implementation of the application of that genomic data into the health system’.
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice
A Country representative Australia Professor John Daly, Dean, Faculty of Health, UTS and Professor Jane Maguire, Professor of Nursing, Faculty of Health, UTS
Key Areas for Top Priorities
Challenges Action • Develop a nationally consistent Rapid advancement of • Education of health approach to integrating information, translation to the professionals. genomics into the health clinic is imminent but there has system not been a corresponding • Identification of current and • education of health professionals. future key professional roles for Capacity and capability Knowledge levels about predictive nurses in genomics development for Genomics in and diagnostic capabilities of tests Nursing is limited. Coupled with this, there • Research to explore cultural • is a gap between consumer uptake differences in consumers and Development of a genomics of testing and health professional health professional regarding and Nursing Research and education as direct to consumer privacy and use of genetic Translational Science agenda advertising for genetic tests to information. Currently in create personalised genetic Australia a medical practitioner profiles via the internet is readily can chose to disclose genetic available. Consumers are advised testing results to other family to “ask their health professional” members without the patients to answer their questions about consent if they deem that the results. Urgent need to raise family member is at high risk. consumer understanding of benefits and limitations of genetic information.
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative Brazil Erika Santos, Hospital Sírio-Libanês, São Paulo
Background Nursing Genetics and Policy My Country The Nursing Role genomics in Nursing is the largest group of the initiatives Brazil is a country of Brazil does not have a specific public health professionals in the country. continental healthcare policy for genetics and genomics. The nursing workforce is divided into dimensions with This issue has been constantly two levels: Registered Nurses Specialist services more than 8 million addressed during the development (453,611) and mid-level technical University hospitals, philanthropic km2, 206 million of public policies in other specialties professionals (1,400,000). Federal institutions and private institutions inhabitants, and 5 The Neonatal Screening Policy has Nursing Council regulates the are the main entities responsible for thousand cities. achieved great advances in the care profession with 27 State Councils. providing specialized genetics Of the total population, 84% live in services. In private health insurance of families and structuring of the urban area. In the last census, system, genetic counseling and services mainly through NGOs 47.1% of the population declared genetic testing are available The National Policy of Care to People themselves white, 7.6% black, 43.1% Education and Training according to guidelines established with Rare Diseases will enable the brown (pardos), 1.1% yellow, and Nurses receive their training in public by regulatory agencies. accreditation of Specialized Care 0.4% indigenous. and private universities in four-year Multidisciplinary team approaches Services. The initial genetic risk programs, which follow national vary depending on the specialty and assessment will be performed in Healthcare in my country curricular guidelines. In addition to its funding: medical geneticist, primary care and the follow-up will The Public Health Care System is theoretical and practical contents pediatrician, clinical oncologist, be under the responsibility of called Sistema Unico de Saude - SUS during the undergraduation course, neurologist, nurse, psychologist, and specialists in genetics through (Unified Health System). Federal 500 hours of supervised internship is social worker. genetic testing. Government must to expend 12% of required in the last two semesters of Federal government has sponsored the revenues obtained from taxes the program. The nursing curriculum Mainstream/integrated services research projects specially dedicated collected from the population. About is organized in three areas: Biological Nurses have been involved in to genetics and genomics issues. In 25% of the population has coverage and Health Sciences; Human genetic counseling since 1980, these projects, the traininging of humanhumaumum n from private health insurance Sciences; and Nursing Sciences. The providing initial assessment, risk resources is one of the mainmain system, mostly paid by employers. under graduation course certifies for identification, patient/family objectives. a Generalist practice. education and counseling.
Resources Key challenges Areas for Action Top Priorities • Population to have access to • Participation in health policies Brazil has professional genetic services. The services are My Views – discussion to increase awareness organizations that provide still concentrated in the South and for Genetics ad Genomics. information. We have graduation Southeast regions of the country. In • Define the role of the specialist courses in genetics (not in nursing). the public health care system it is nurse in genetics. • Education of nurses and health care restricted to university hospitals. staff on genetics and genomics. Genetic testing is offered in the • Define the competencies of the context of research projects. nurse - generalist and specialist • Improving awareness of the role of nurses in genetics and genomics. • Definition of essential competences • Education of the nurse and in genetics for non-specialists. health team. • Disseminating information about the benefits of access to genetic • Professional training in Genetics to care for the population work in primary care.
• Definition of the competences and criteria for generalist nurses, specialists (oncology, cardiology, mental health) and specialists in genetics promoting recognition of the specialty.
Contact [email protected] for more information or to discuss this poster further. [Insert[Innserrt picturepiticttureurur off yoyourur Global Genomics Nursing Alliance (G2NA) country’scooounntry’s flag:fllag:: heightheight Accelerating the integration of genomics into Canada 7cm]7ccm] everyday practice Mary Jane Esplen, PhD, RN Professor, Scientist, Vice-Chair, Faculty of Medicine, University of Toronto; Executive Director, de Souza Institute, University Health Network
Background Nursing Canada is the second largest country in the The Nursing Role world after Russia. However, its population is Genetics and only about one-fifth of Russia's. • Diverse from tertiary care centres to rural community- genomics in Canada has 10 provinces and three territories, healthcare each with its own capital city, Ottawa based care. Policy initiatives is the • General and specialist roles Specialist services capital through certification. • National surveys/ research city of • Front line practice mostly Some Advanced Practice Nurses projects considered role of Canada. institutionally or community have obtained continuing nurses in genetics. based. These education to support specialized • Nurse practitioner roles, Nurse Provinces Genetics Services (were early • Some provincial ministries and led clinics, Advance practice pioneers in genetics). created recommendations for territories roles, and Private Practice roles. new genetic services are grouped into five regions: • Leadership Roles. Specialized research roles with (specialized nurses on panels • Research Scientist. genetics teams (funded by who work in services or • Atlantic Provinces: Newfoundland , • Education Roles. research grants). Labrador, Prince Edward Island, Nova research). Scotia & New Brunswick Education and Training • Central Canada: Quebec & Ontario New born screening/counseling • Lack of Federal initiative. • Prairie • Bachelor Science Entry roles for nurses with continuing Provinces: Manitoba, Saskatchewan, & • Masters of Nursing; Masters of education or on the job training. • Recognition of “educational Alberta Science; needs” of nurses/ physicians by • West Coast: British Columbia • Doctor of Philosophy. With increase in Masters Degree researchers, clinicians and • North: Nunavut, Northwest • Continuing Education programs- Genetic Counseling- Territories & Yukon Territory academics for Continuing Ed and programs. Services are more often hiring Formal education. Population: 36,466,096 certified genetic counselors. Canada has two official languages: English and • Missed opportunities for nurses. French Barriers or limited opportunities for specialist roles in services. • Healthcare in my country Key challenges Emerging services led by Geneticists/ Physicians • Professional Nursing • Public Funded health Care System led overseeing certified genetic organizations have limited by Provincial Ministries and overall counselors. attention to genetics as issue for Federal ministry. nurses. Areas for Action • Hospital/Community care. • • Urban and Rural settings. Define genetic competencies to • Core competencies for genetic • Large Diverse populations. guide nursing practice and Top Priorities nursing and related genetics education (funding, reviews, • Aim for equality in access and My Views knowledge not defined in services. competency framework) Canada. • Have been missed • Current financial challenges in • opportunities as other maintaining publically-funded Increase awareness about • Lack of national strategy or any professionals have assumed system. relevance of genetics to nursing strategy for integrating genetics among nurses/ educators/ roles in Canada for specialized into nursing education. administrators/ policy makers/ services - so need national or researchers/ other health international strategies to • Nurses not recognized by some professionals (networks; CNA for move forward. policy makers as important certification; Educational Resources; Resources stakeholders in provision of Multi-disciplinary meetings) • Most nurses/educators genetic health services. continue to see genetics as not Workshops for continuing • National/ International priority an area relevant to all (lack of Education. • Lack of genetics a barrier for to Integrate genetics/ genomics awareness/ interest). effective contribution of nurses to undergraduate, graduate, Local 1:1 Training in clinics. to address gaps/policy issues. continuing education (RN exam • Need support from Educators questions; web-based) and Policy makers and Nurse Some local online or educational • Few nursing leaders with credentialing leadership to resources (which can be out of genetics knowledge to raise • Increase capacity of nurse help support roles for nurses date). awareness of potential roles/ researchers focusing on topics and leadership opportunities. needs. related to genetics/ genomics Disease organization websites. • Need a united voice and • • Nurses involvement in policy Create international strategy to approach to move the field ISONG and other international work challenged by workload. support/ lobby for development forward. conferences or meetings (including of genetic nursing roles (data bases; forums to engage stakeholders; research conferences). • Physician education/training lobby C N A; links with ISONG etc) also has some similar www.geneticseducation.ca challenges. (popular and well-used resource in Canada) Contact : Mary Jane Esplen, PhD RN [email protected]; www.desouzainstitute.com [In[[InsertIInnsersseerertpt picturepictiicctc ureururree ofof yoyyourourur Global Genomics Nursing Alliance (G2NA) couccocountry’souounntrntttrry’syy’’’ss flag:flf aag:aggg:: heightheheigiighgghht 7cm7c7cm]cmcm] Accelerating the integration of genomics into everyday practicee G2NA Country representative COLOMBIA. S.A Pilar Amaya Rey PhD : Universidad Nacional de Colombia
Background Nursing Genetics and Policy COLOMBIA : High proportion RURAL Article 17 of the Law 266/96 of and DISPERSED ZONES Population : genomics in initiatives Colombia defines the Nursing Role: 48. 734.330 Births : 541.000 (2015) Risk Control (RC): Anticipatory •Design, implementation, and control of healthcare Size: 1.138.910 Square Kilometers Care, reduce the damage, inter- Policies, Projects and programs. Specialist services: Genetic sectorial and interdisciplinary •Establish models of Nursing Care based Services were regulated 10 JUNE work. on population density and resources. •Renew Primary Care (RPHC) • 2016 by Colombian Law Apply quality criteria: Scientific, Integration: Interdisciplinary work, technological and Ethical. The training in genetics in medical Social participation, clinical •Direct Hospital services, and primary education has been variable and services, scientific teams, care to health. neglected in some Universities. •Exercise the clinical care, administration, intersectorial work etc. In Nursing this area of Genetics • Family Health Orientation FH: research, teaching in general and and Genomics will be an specialized areas Self-care, self- management, innovation for schools of Nursing. clinical care: Continuity 1,2,3 Colombian Health System (05. •Exercise Counselling and Consultations. Some graduated students receive prevention levels, oriented to: 2016): IMHC Health System: The few topics in genetics such as individuals in the family and sum of all institutions organizations, Education and Training • chronic illness, Oncology, Aging, community resources.(Finances, services, out- ANEC (2015) reports 60,000 professionals with University training (37 Diabetes, etc.. Likewise in Differential Regional Context clinics, Hospital, Programs, programs), 70 of specialization, 12 MS, 3 reproductive health these are Management of Genetic and Community) Doctoral Programs. components of practice. Genomics conditions will require Social System: Institutions, Specialists in Genetics such as MSc technical –Scientific International regulation, Laws, and processes The area of genetics and genomics is are restricted to Medical Doctors. Cooperation with other countries permitting people to enjoy quality of limited or absent in graduate and These are educated in Medical to improve professional training, life. undergraduate Programs. Schools. They offer genetic services strengthen information systems, Genetic services are partially or Today, the role of Genomic Nursing is of diagnostics, and consultations research and Clinical practice NOT covered by the health very minor and lacks appropriate and supported by physical therapies (Health Minister, 2016). insurance System. sufficient training. and laboratory services.
Resources Key challenges Areas for Action Top Priorities Possible resources (to verify) in aid INNOVATION in Genetics/ Genomics: Multiple Networks: Local, Country, •Recognize, collaborate and lead to increase Nursing knowledge International: Nurses, Professors, in the process of implementing about genomics in Colombia: Permanent presence of Nurses at Researchers, individuals, Family, the new Colombian Health 1. Graduate programs of genetics different levels: Political, academic, Collectives, Primary Care centers, System (IMHC) because the and Nursing graduate Programs in and clinical settings, as well as in Hospital, Schools of Nursing System of health must assume Colombian Universities and work teams. University Health Systems. control of possible actions of interested foreign programs. every one and of NURSING 2. Working group on Orphaned Training of the professors and Training: Strategies, groups of •Genetic and Genomics. Health professionals. diseases in the Colombia Ministry practice of the faculties of nursing, care is a function of Risk Control, of Health, thematic experts, wide distribution of educational Primary Care, Family Health and genetic Institutions associated Inclusion of genetics and genomics in all University Programs technologies. Regional Diversity. with Universities. of Nursing (Graduate and •Development of Programs on 3. National Association of Nursing Undergraduate). Strengthen the research capacities genetics and Genomics in Faculties. in Multi-centers, Multi – places. congruence with actual regional 4. National Association of Nurses. Design Research Projects. health conditions. 5. Research projects for To become leaders in the process •National cooperation guided by COLCIENCIAS so as to prepare To Combine in the new Area and outcomes in the health System Schools of Nursing in Colombia, Genetics /Genomics : Inter- human resources in nursing and represented in the Population. with scientific Associations, Genomics. disciplinary Science and general technology and TICS. Nursing Faculties and Nurse 6. Fulbright scholarships so as to Practitioners and Population. bring experts to participate in To develop national and •International Cooperation to graduate education. international networks for teaching, strengthen Human Talent in research, services, PC, Nursing in the dimensions of Epidemiology. resource formation, practitioners To become leaders in the process and research. Cooperation goes and outcomes. further than particular interests.
Contact e-mail: [email protected] [email protected] Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative GERMANY Professor Sascha Köpke, University of Lübeck, Germany
Background Nursing Genetics and Policy My Country The Nursing Role genomics in initiatives Germany currently Nurses are the largest profession Genetics Diagnostics Law has more than 82 in the health care system with healthcare (http://www.gesetze-im- million inhabitants about one million employed (incl. Specialist services internet.de/gendg) with a mean age of geriatric nurses). Nurses are There is a network of genetics 44 years. Most people are central to provision of care in most centers throughout Germany, The National Genome Research white Germans. 17 million settings. There are very few mostly based in university Network has been funded by the inhabitants have a migration specialist roles as e.g. in wound hospitals and all citizens have Ministry of Research since 20013 background, half of them with a nursing or diabetes counseling. access. Also some non-hospital- (http://www.ngfn.de). German passport. Usually nurses work under based specialists provide genetic supervision and guidance from Healthcare in my country counseling and sometimes also medical doctors. We have a multi-payer health care GPs, who might also refer patients system with two main types of to specialist services. Nurses have health insurance: "Statutory Education and Training no role in this. Health Insurance” (88%) aka There are 3 basic nursing trainings Mainstream/integrated services “sickness funds” and "Private & professions i.e. general, There are various integrated The action plan individualized Health Insurance“ (12%). We have children’s, & geriatric nurse. services e.g. in breast care centers medicine (http://www.ngfn.de one of the most restriction-free Courses run for three years in or other oncological services. Also /index.php/aktionsplan.html) healthcare system in Europe, with vocational school and are pediatric specialists may offer patients allowed to seek almost completed with a certificate with these, again without nurses being Many other initiatives e.g. any type of care they wish increasingly education provided by involved. focusing on ethical issues i.e. by whenever they want. The turnover polytechnics and some university the German Ethics Council of the health sector is about (as my own). There is no (http://www.ethikrat.org €287.3 billion, i.e. 11.6 % of the regulatory body, so nurses are not /themen/medizin-und- GDP and about €3,510 per capita. required to prove regular CNE. pflege/gendiagnostik)
Resources Key challenges Areas for Action Top Priorities None I am aware of /! How do we deal with information - Describe the situation in detail My Views – about genetic and genomic issues. - Nurses’ roles Where do we expect information, - Physicians’ roles Learning from others: Germany is how do we assess it and what do we -Consumers roles’ a developing country in terms of do about it? - Need for action - Information resources genomic nursing and we have to carefully check what others do I guess the main challenge is to - Education and how this can be transferred address the topic of genomic nursing - Development of sources of to our system. in general, raise awareness of its information and education importance and come up with - Inclusion in basic nursing Establishing common views: suggestions of nurses’ roles. training - Higher education courses Consented standards for specialist genetic nurses Education surely remains an issue - Inter-professional throughout Europe or globally with nurses only in very selected education would help to discuss and areas as e.g. oncology being aware of - Information and Decision implement standards in Germany. this topic, but obviously lacking support education (see resources). - Informed Decision Making support Describing nurses’ roles In addition to roles of other Genomic literacy (as part of general - Development and provision professions with a special focus health literacy) among both health of decision aids on decision support and care providers and consumers is - Development and provision counseling. likely to be low. of evidence-based information materials Reliable and valid research Informed choice and shared - Infrastructure evidence on (specialist) nurses decision making needs to be - Funding roles in genetic counseling. addressed. -Staffing -…
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative Hong Kong, SAR CHINA Professor Sek Ying CHAIR, Director, The Nethersole School of Nursing, The Chinese University of Hong Kong (CUHK), Hong Kong
Background Nursing Genetics & Policy My Country: Hong Kong (HK) (the The Nursing Role genomics in Hong Kong Special Administrative In HK, there are 50,461 registered initiatives Region of the People‘s Republic of and enrolled nurses and 4,462 healthcare In HK, a new children’s hospital Specialist services China) has a population of over 7.3 midwives (as of Dec 2015). In (HKCH) will commence service in 2 HK has a centralized testing & million in an area of 1,106 km . China, the population to nurses 2018, and this may open up new counselling centre under the China (the People's Republic of China ratio of 1,000: 2.36 in 2015 has opportunities to have more nurses Department of Health: Cheung Sha (PRC)), has a population of over been reported. who may play a more important Wan Clinical Genetic Service. Two 1.381 billion (1/5 of the world's role in genetics/genomics nurses are trained in UK for specialist population) in an area of 9.6x 106 Education and Training consultation. km2. In both HK and China, nurses are services in this centre. In the private sector, there are many institution- educated in universities/nurses In China (in collaboration with the Healthcare in my country based, hospital-affiliated and training schools, usually in Wellcome Trust, UK and Oxford Healthcare in HK is largely (80% commercial genetic diagnostic programmes following secondary University), there is the China hospital care) provided by the services provided by medical school or after undergraduate Kadoorie Biobank (CKB) project Hospital Authority (HA), paid for by genetics practitioners throughout programmes. Nursing education in (similar to the UK biobank project) taxation and small co-payments at China and HK. China comprises three levels: which aims at finding genetic the point of service. Private health- Mainstream/integrated services Diploma; Advanced Diploma; and factors that affect chronic diseases care is also widely available in HK. There are private hospitals (or Baccalaureate Degree. Master and in a study of over 0.5 million Health care in China is provided by patient-paid services offered by Ph.D. programmes are available in adults aged 30-79 from different a 3-tier system, with rural clinics, public hospitals); however, clinical both HK and China. In HK, Nurses regions of China. Such a project district hospitals, and municipal genetics and laboratory genetic can be registered in one of four has the potential to have a hospitals. The healthcare service is diagnostics are still not recognized as classes: General, Psychiatric, significant impact on the paid together by the national a medical specialty in HK & China. Mental Sub-normal and Sick development and integration of healthcare insurance and residents Nurses are trained by these hospitals Children, and there is a Post- genetics/genomics within the themselves. Private health insurance /centres in an ad hoc short- term registration Diploma in Midwifery healthcare system. is also available in China . for registered nurses. manner.
Resources Key challenges Areas for Action Top Priorities Access to overseas resources in China • According to a recent survey (April, My Views – While many Hong Kong might be difficult due to some 2016), young doctors in Hong Kong • Be active in discussion about the citizens recognize the importance of censorship issues. Furthermore, are losing interest in joining the which areas of effective use of new and excited research areas of resources that supports the obstetrics and gynaecology (O & G) genomic medicine in nursing genomics/genetics, and identify with linguistically and culturally diverse departments (only half of the post practice would be beneficial for world famous researchers of HK, e.g. needs of people in HK and China are were filled last year) and the O & G our community. Sir David Todd (haemoglobinopathies), currently in short supply or are being department in public hospitals • Encourage relevant government Lap-chee Tsui (cystic fibrosis), Pak Sham offered only for those who can afford revealed a particularly severe bodies to set up strategies or (psychiatry), and Dennis Lo (free foetal the expensive fees (and these are not exodus last year, with 17% of mechanism to fund such DNA), and our hospital has over 100 designed specifically for nurses). obstetricians jumping ship, rising initiative for the effective pre-implantation genetic diagnosis Currently, these courses are available: from 1.9% the year before. development in translation of cycles (for >20 genetic conditions) 1. The obstetrics and gynaecology • The overcrowding problems in HK genomic medicine (in a long carried out already; HK still have many Department of CUHK runs a MSc and China hospitals also take the term basis). gaps in the translation of genomic programme on clinical genetics. tolls on nurses, both mentally and • Be involved in regional/national medicine/nursing into clinical practice 2. HKU & PolyUHK offers some courses physically. discussion about the (e.g. many patients have to wait for >1 in molecular and diagnostic pathology • Doctor-patient relationships in encouragement of the use of year to schedule an initial consultation & Medical Laboratory Science China have been deteriorating in genetic testing in period of with a geneticist). There is also a respectively. the past 10 years. Attacks on health pregnancy and new born to similar lack of genetics professionals in 3. Baylor BMC and CUHK also have care professionals have become a maximize the benefit of the China. Despite of the many competing started an advanced training common event. health of the community. challenges of public health issues, HK programme on clinical genetics (as • Raising awareness of the • Be active in development and and China must establish a strategic Johns Hopkins and Peking Med Coll. government in urgently prioritizing revision of training programme approach for a coordinated effort in and Peking U have done in the past). a strategy, mechanism or funding for genetic nurses as well as effectively translating genome-based 4. In China, the Beijing Genomics for translating basic genomics/ general genomics/genetic knowledge and technology for the Institute in Shenzhen runs some short genetic research into clinical contents of the curriculum in benefit of public health. Mis- training courses. practice in HK and China. universities/nurse training interpretation and unprofessional 5. Genetic courses have been • Nurses’ acceptance to basic science schools. diagnostic testing could cause severe structured in most of the medical & genetic knowledge needs to be damage to the healthcare system. schools in China. encouraged.
Contact: [email protected] for more information or to discuss this poster further. [Insert[Insertpt picturepicture of yoyourur Global Genomics Nursing Alliance (G2NA) coucountry’sntry’sys flag:flag:g heightheight 77cm]cm] Accelerating the integration of genomics into everyday practice G2NA Country representative ISRAEL Sivia Barnoy, Department of Nursing, Tel Aviv University Efrat Dagan, The Cheryl Spencer Department of Nursing, University of Haifa Background Nursing Genetics and Policy Israel – A country of multi- The Nursing Role in Israel genomics in Initiatives cultures and immigrants Israel has 4.8 nurses per 1,000 residents, compared with the OECD healthcare average of 8.8 nurses. Clinical roles Specialist services Advanced practice (e.g., intensive care, Genetic counseling is given by The genetic/genomics midwifery) licensed genetic counselor or recommendations and services for Clinical nurse coordinator (e.g., stoma, medical geneticists. Prenatal the population in Israel are diabetes, wound healing) genetic screening basically done at worded by the Israel Society of Nurse practitioners (e.g., geriatrics, Medical geneticists. This palliative care) the health funds. Diagnostic association interacts with the Healthcare in Israel Clinical research coordinator genetic testing done at the Israeli health care system is a Administrative roles hospital genetic institutes. Israel Genetic Counselors national public health system Deputy and chief nurse (dept. or clinic) Nurses have marginalized role in Association and both recommend based on tax revenues and Supervisors this professional process, and only to the policy makers in the government funding. Head nurse of health organization at the community clinics. Ministry of Health. Educational roles Mainstream/integrated services Mentor (clinical instructors/preceptor) Genetic information Law The National Insurance Health Law Faculty (in the Universities) Services funded by HMOs of 1994 states that all citizens of Prenatal screening and The law relates to some aspects of Israel are eligible for membership Education and Training diagnosis including NIPT (not genetic information including: in one of four national health In Israel, 13 undergraduate nursing funded). who is allowed to provide genetic funds that offer a standard programs in 5 universities, 8 colleges Tumor profiling counseling and where counseling "basket" or package of services and three non-academic programs that Karyotype or CGH for pregnant should take place. and cost to members; the cost and train ~1000 academic nurses per year. women >35 years and for The programs are based on several standard benefits are set by law. diagnosis. Nurses not mentioned in the law layers: life sciences (including 2 out of 160 credits in clinical genetics), social, Nurses have a marginalized role in nursing and medical sciences; health this professional process, only administration and research methods. providing information mostly All graduates have to pass a regarding carrier screening. governmental exam.
Key Challenges Areas for Action Top Priorities Our View To define the specific role for nurses in 1. Implementation of `genetic perspective` Every nurse should include genetic genetics. in nursing across clinical settings, information throughout the clinical intake. To include key points in genetics in each including community clinics and The following should be performed prior to clinical intake. hospital settings. implementation. To develop advance programs in 2. Development of tools to include genetic genetics for nurses. information in each clinical intake done 1. To conduct a survey aimed at evaluating To integrate nurses in genetic clinics and by nurses at community clinics and IF, HOW, in WHICH SETTINGS and for institutes. hospital settings. WHICH PATIENTS do nurses ask for any To include nurses in the policy makers 3. Participation in the medical geneticist genetic information and family history associations. and genetic counselor meetings and of diseases; and how they documented To promote research by nurses in the workshops. field of genetics. their findings. 2. To develop simple tools a. To improve nurses awareness for the importance of the genetic/family information. b. To implement this activity in clinical settings, as part of the nursing intake. 3. Develop advance programs in genetics for nurses 4. To define the specific role of nurses in genetics and incorporate changes to the legislation.
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative JAPAN Naoko Arimori, The Japan Society of Genetic Nursing (JSGN)
Background Nursing Genetics and Policy My Country The Nursing Role Geographical size Japanese Nursing Association (JNA) was genomics in initiatives The east of the Eurasian mainland. The land area is about established for the licensed public health nurses, 378,000km², making it the sixtieth largest country in the “Guidelines for Genetic Tests and Diagnoses in midwives, nurses, and assistant nurses(=LPN) in world. Japan consists of four main islands and another healthcare Medical Practice” 6,848 smaller islands. About 67 percent of the land is 1946. The Act on Public Health Nurses, Midwives This guideline was drafted by representatives of 17 mountains while only 13 percent is plains. and Nurses has provisions concerning the activities Specialist services medical societies including the Japan Society of Population of nurses, which are stipulated as “to take care of Human Genetics which had received a request from The Japan Society of Human Genetics(JSHG) Japan’s population is 127.01 million as of January1, 2015. people who are under medical treatment”, and “to The Japanese Association of Medical Sciences, and After a decline in birthrate around the end of World War II, JSHG was established in 1956 in order to assist medical treatment” (Articles 5 and 6 of the was approved on February 18, 2011. Japan’s population showed an increase. The first population Act) improve the practical levels of medical geneticists decrease (post WWII) was seen in 2005 and it has who get involved in clinical genetics, “the fluctuated thereafter. Since 2010, the population is on the ĺ7KHSXUSRVHRIthe Japanese Association of Education and Training Japanese Board of Medical Genetics, Clinical declining trend. Medical Sciences is to "contribute, in close To become a public health nurse, midwife or nurse in Geneticist” was established in 1991, and a total of cooperation with the Japan Medical Association, to Japan, it is essential to complete a required curriculum at 1269 clinical geneticists have been qualified by Healthcare in my country the improvement of medical science and care an educational institution set forth by law, pass a national 2015. Health Insurance system and medical fee through the research and development of science Japan’s social security system are roughly divided into four examination that can be taken once a year, and obtain a and technology in the field of medicine". component pillars: social insurance, social welfare, public license granted by the Minister of Health, Labour and The Japan Society of Genetic Counseling Welfare. To become a nurse, basic academic background assistance and public health. The core social insurance is a (JSGC) for twelve years and three years basic nursing education Health, Labor and Welfare Ministry started to compulsory system that ensures the livelihood of citizens by The Japanese Board of Certified Genetic providing a given amount of cash or in-kind benefits in case are required. To become a public health nurse or midwife, develop a coherent strategy related to genetic tests Counselor(CGC) was established in 2005, and a of “events insured against, ” namely, disease, injury, training for nurses plus one or more years of education and diagnoses in medical practice, non-health, are required. Foreign nursing personnel who wish to work total of 182 have been qualified by 2015.The CGC childbirth, death, old age, disability, loss of job, etc. Within business, research etc in Japan. this framework, a universal healthcare insurance system in Japan are required to take Japan’s national nursing group includes many nurses. extending to all citizens has been established in 1961 in examination to obtain a Japanese license because accordance with the National Health Insurance Act, so that nursing licenses obtained overseas are not accepted. The Japan Society of Genetic Nursing (JSGN) anyone can obtain appropriate healthcare anywhere at any JSGN was established in 1999. The course of The Act on General Support for time. Japanese citizens have to be covered by any of the Credentialing system following medical insurances: 1) employee’s health Certified nurse specialists
Resources Key challenges Areas for Action Top Priorities There are some genomics education resources which made by University, ¾Nurture high-quality human ¾ Clinical setting My Views – freely available online in the Japan. resources for the new era 9 Collaboration with other Ensure all of the Some examples below. ¾ APN of Genetic nursing medical genetics/genomics population benefit from ¾ Nurse Administrator who know professions as Genetic nurse 䞉Genetic Database CNS Genetics and Genomics http://www.congre.co.jp/ genetics/genomics issues 9 Sciences. gene/DB.html ¾ APN in Related areas who are On and off the job training interested in Genetics/ programmes for all areas of Genomics clinical nursing 9 Start to do an active part of Genetics Nurse in Advanced Accept diverse values
䞉Orphan Net Japan䠖ONJ ¾Demonstrate good practice Rights http://onj.jp/ performance as Genetic Health nurses for ¾ Education 9 Model core curriculum for Social participation ¾ People with genetic/genomic basic nursing preparatory Education diseases programmes. ¾ Clinical Geneticist, Genetic Employment 9 Model curriculum for 䞉GENE Reviews Japan Counselor, other APN, General certificates for the following http://grj.umin.jp/ nurse and Nurse administrator three: certified nurse specialists, certified nurses ¾Influence policy-making to and certified nurse advocate and empower for administrators. 䞉IDEN Net people who need the support http://idennet.jp/ ¾ Research because of genetic and 9 For Complicated conditions genomic conditions of patients ¾ Government 9 Exploratory of Evidence ¾ Community Based Nursing (EBN) & 䞉About 40 clinical genetic departments have websites, ¾ Clinical setting Narrative Based Nursing and explain the genetic tests. (NBN).
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative UNITED MEXICAN STATES Juana Mercedes Gutiérrez-Valverde, Universidad Autónoma de Nuevo León
Background Nursing Genetics and Genetics and genomics in healthcare My Country The Nursing Role genomics in continued… Mexico, officially the United Mexican States is a Federal Republic 2003. First Doctoral Program in healthcare in the southern half of North Sciences of Nursing opens in INMEGEN is the Genomic Medicine Specialist services America. The government is a Monterrey, NL. reference center in Mexico. It Federal Presidential Constitutional 2006. Nursing certified as offers a variety of services not only The National Institute of Genomic Republic. It is bordered to the north profession by the National Salary to the healthcare sector but also to Medicine (INMEGEN) was by the United States; to the south Commissions of Mexico academic and other non-academic established in 2004 by the and west by the Pacific Ocean; to 2007. Creation of the Standing organizations. Services include Promotional Consortium of the the southeast by Guatemala, Belize, Committee of Nursing, as a molecular diagnosis such as National Institute of Genomic and the Caribbean Sea; and to the collegiate advisory body of the paternity tests, pharmacogenomic Medicine. The consortium, east by the Gulf of Mexico. Ministry of Health (Official tests and monitor hematopoietic created in 2001, was comprised by Covering almost two million square Mexican Federal Gazette) cell transplant, to mention just a the National Autonomous kilometers (over 760,000 sq mi), Join the National Research System few. Genome research technology University of Mexico, the National Mexico is the sixth largest country (The National Council of Sciences services include gene expression, Council for Science and in the Americas by total area and and Technology). genotyping, next generation Technology, the Ministry of Health the 13th largest independent 2012. Nursing graduates, may sequencing, protein identification, and the Mexican Health nation in the world. With an prescribe basic medications histology and microscopy services. Foundation. estimated population of over 120 determined by the Ministry of A variety of other projects in the million, it is the eleventh most Health (Official Mexican Federal areas of nutrigenomics, Today, INMEGEN is the national populous country and the most Gazette). pharmacogenomics, cytogenetics populous Spanish-speaking country leader in genomic research for Education and Training and epigenetics can also be medical applications seeking to in the world while being the second proposed. most populous country in Latin improve health in Mexico. Its main America. Mexico is a federation Education Level % objectives are: developing scientific research projects with comprising 31 states and a federal Technical 55.11 ** Autonomous Universities district that is also its capital and cutting edge technology, training most populous city. Post-Technical 8.14 human resources of excellence; BN 32.80 and generating genomic Specialties 2.52 innovations and applications to improve health care in compliance Master 1.34 with universal ethical principles Doctorate .06 and respect for human rights.
Health Care Health Care continued… Key challenges Top Priorities
Healthcare in Mexico is of a high Part of employee salaries in In 10 nursing programs My Views standard and is affordable for Mexico is automatically deducted (Autonomous University) are expats. Every city in Mexico has at to pay for the coverage. Retired include the genetics/genomics in • Nursing Training least one world-class hospital. expats can also join the group, the nursing curriculums. Mexican healthcare is comparable although coverage is not • Genetics and Genomics areas to the quality of care found in the automatic. The quality of care However it is necessary that all in the nursing curriculums United States, although the cost is provided by the system varies nursing programs have these considerably less. considerably; some hospitals and syllabus. • Participate in the clinical clinics are truly first-rate, whereas setting (genetics/genomics) There are three levels of others, particularly in rural areas, Create a genomic and genetic healthcare in Mexico, the lowest of are less consistent. nursing course. which is a limited coverage system in place for unemployed Mexicans The top level of healthcare is (which expats will not need to provided by private clinics and utilise). hospitals. Onawhole,healthcareinMexico The second level of healthcare is a is of a high standard and is public sector national healthcare provided at a lower cost than in program (IMSS). Expats working for neighbouring USA. Mexican companies automatically qualify to receive treatment under Life expectancy males: 73.4 years this program. Life expectancy females: 78.3 Contact [email protected] and [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative Nigeria West Africa ADEFUNMILAYO IKEOLU SORETIRE USMANU DANFODIYO UNIVERSITY TEACHING HOSPITAL SOKOTO, NIGERIA.
Background Nursing Genetics and Policy My Country genomics in Nigeria is the largest country in Africa, it is The Nursing Role Initiatives located North of the Gulf of Guinea in West Nurses are the largest in the Africa. Specialisthealthcare services Bordered by: hospital setting among the health From the data collected with Cameroon-East workers, about 146000 were Nigeria has no Specialist services samples from about 20 state out Chad – North West employed within 2015/2016. They Niger- North Republic of Benin as such when it comes to genetics of 36 state of the country, there is are integral in all acute and and genomics in health care no knowledge of genetics and It’s the tenth largest nation in the world with community services. except the CAMRET centre in genomics at all. The Nigerian estimated population of 123,337,822 people with its capital being Abuja. UDUTH where testing and government is yet to embrace Nursing and midwifery and other counseling is been carried out genetics and genomics. In Nigeria It has four major ethnic groups and 65 to 70 % special fields such as A/E, headed by Dr Emeka who was the today many nurses are not aware of people are all black. oncology etc. are controlled by the one that saw the need of of what genetics and genomics is. Hausa / Fulani 35-40 million- North national registration body, the Yoruba 30 million west integrating nurses into the care There is need to enlighten and Igbo 15million east Nursing and Midwifery Council of and invited me to the laboratory. create awareness of genetics and Nigeria. More than 300 ethnic groups with different Nurses are not part of it naturally genomics. languages. English is the common language. here and all over the country as EDUCATION AND TRAINING sampled nurses are not aware. HEALTHCARE IN MY COUNTRY 3 years college, universities part National Health Insurance Scheme was time and full time- 3-4 years. Mainstream/Integrated Services introduced in Nigeria in 1999 in which you are They both attend theoretical and taxed by your employer and 10% is paid at the There are specialist Nurses in point of services. clinical experiences. Midwives and oncology and cardiology whose other specialties have a specified NHIS has 5% coverage nationally. NHIS and role is to take history and assist health maintenance organization want it duration of training also. client where necessary while the mandatory. majority work load is carried out There are private health services and general practitioners in which you pay at the point of by medical practitioners and services. laboratory scientists.
Resources Key Challenges Areas for Action Top Priorities Information and awareness of • Education of health professionals There are some excellent genomics My Views – genetics and genomics is a key – nurses need to educate education resources freely Educating nursing tutors, challenge in my Nigeria. Education of themselves and also to teach and available online. Such as: lecturers, and practicing nurses at professionals is very essential; unless encourage others. necessary centers, Professional and until health professionals are http://www.genome.gov • Become involved in public education, eg seminars aware of both the benefits and awareness campaigns and take conferences. limitation of genetics and genomics opportunities to educate the public will not have access to patients and the public, Policy decisions regarding uses opportunities that may improve their wherever possible. genetics and genomic health and wellbeing. information in health care. • National policy makers of nursing We need more of testing and bodies should be informed and Public education, because counseling centers in the six http://www.nursingworld.org/Mai encouraged to integrate genetics without education, discussion on geopolitical zones in Nigeria. nMenuCategories/EthicsStandards and genomics in to nursing policy is less meaningful. education and practices Trained university nursing lecturers, Public discussion on nature of nursing tutors are necessary. • Be involved in national genetic and genomic discussion of management of information. This is a broad Awareness and literacy in the additional findings and agreed sociological rather than a health general public is also a key challenge. policy for dealing with these. question, but use of social media will generate more openness in • Practicing nursing should be other areas and much awareness encouraged and sponsored to acquire skills in genetics and More of testing and counseling genomics. laboratories across the nation.
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative THE NETHERLANDS Mrs. Barbara A.H. Caanen, genetic counselor Maastricht University Hospital, Chair of the Dutch Association of Genetic Counselors (NVGC) and Mrs. Anja van Rens, genetic counselor, the Netherlands Cancer Institute/ Antoni van Leeuwenhoek Hospital Background Nursing Genetics and Policy My Country The Nursing Role genomics in Initiatives The Netherlands: • Since 2000 Oncogenetic (Breast-, Ovarian-, • > 17.000.000 inhabitants Colon-, Endometrialcancer) and also healthcare In 2015 Rules for charging health care in The • 9 Clinical genetics departments Cardiogenetic patients (HCM, DCM) make it Netherlands changed. Al patients needed face • 55 Genetic counselors necessary to train more nurses as GC’s Specialist services to face contact with a doctor, so GC’s could no (genetic counselors) • Genetic testing is prohibited only for clinical longer work independent. Doctors needed to • GC’s also provide counseling in genetics departments in university hospitals interfere with the content. The planning of Neurogenetics, Genodermatosis and and related outpatient clinics in other office hours became more complex, because Prenatal diagnostics hospitals GC’s started taking personal and family • GC’s take family history and build pedigrees • Only clinical geneticists and genetic history. Then the doctor partially took over • They provide counseling (pre- and post-test) counselors (GC’s) can offer DNA-testing to counseling, needs assessment and • Offer diagnostic testing and communicate patients communication of test results. In outpatient test results • GC’s can be nurses, but during the years also clinics, doctors had to accompany the GC. This • Preserve and maintain databases for other health care professionals are trained was not efficient, so now often doctors go to research as GC’s this clinics alone. All the changes lead to • Participate in multidisciplinary teams undermining the work of GC’s. • Teach medical students, nurses, clinical Not all clinical genetics departments geneticists in training interpreted the new rules in the same way. • Work as case manager GC’s were discontent and dissatisfied with • In the standard training for nurses genetics their work. stays neglected. Only in training specialized A survey was taken among clinical geneticists nurses, for example oncology nurses, it is Mainstream/integrated services and GC’s to find out their opinions and needs. common to integrate genetics in the training Clinical geneticists and genetic counselors There is consensus, that GC’s are Healthcare in my country work in multidisciplinary teams together with indispensable and that an accredited masters • Every inhabitant is obliged to at least have a Education and Training breast surgeons, enterologists, pathologists, education is needed. In 2016 8 GC’s start basic health insurance, so that the security At first GC’s were trained on the job by clinical cardiologists, gynecologists, dermatologists training as MPA (Master Physician Assistant). of good care is guaranteed for everyone geneticists. In 1997 an education committee and more, depending on what is needed for • It is possible to choose an additional health developed a training program for GC’s. 01-01- their patients. Lately there is a shift to other insurance 1999 the training became accredited by the medical specialists starting the first steps of • Personal contribution for medical service in Dutch Society of Clinical Geneticists (VKGN), genetic service. For example: BRCA-testing in 2016 is € 385,- for all adults (>18) but not by government. A revised program ovarian tumors by gynecologists to indicate • Medical services from family doctors is started in 2010. Efforts to get accredited PARP-inhibitors 100 % insured failed. In 2016 8 GC’s start MPA training
Key Challenges Areas for Action Top Priorities
• Getting an accredited Masters education for GC’s: MPA Task reallocation is taking place in the next few years: • The past years have been very disturbing and • Give GC’s who are not able/willing to get a masters challenging. It is important to find the calm after the degree the chance to work satisfactorily • 8 GC’s start training as MPA (Master Physician storm and be able to look forward again • Make it known to all professionals in genetics what to Assistant) for genetics : • Task reallocation is needed expect from the new professions in genetic counseling - MPA’s need to find their place in the field • All professions in genetics need to find out what to • Find a good way to work together in the future - MPA’s can provide genetic counseling independent expect from the new professions and how to perform in • A grant from Dutch government is available for GC’s at a high level the new roles without a master in health care. GC’s with a previous - MPA’s are able to counsel a broader group of • All these professions need to find new ways of working master in health care also need to get funding for the patients, within a certain specialty together MPA training - MPA’s can work in outpatient clinics, without a • Compromises have to be made between the clinical clinical geneticist present genetics field, governmental issues and rules of - Other workers in genetics need to learn what to insurance companies expect from MPA’s • In all these developments it is most important to consider the best quality of work. We can not • For GC’s who are not able to start this training: compromise about the high standard of work we always - There is a need for further education, in service provided training and lifelong learning • The next years will mark a period of changeover. It is - Accreditation should be guaranteed important to keep communicating with all participants - GC’s can opt for European registration using the about the changes and everyone’s position and tasks grandfather clause
Contact [email protected] or [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative NORWAY Inga Bjørnevoll, Head of Department of Medical Genetics, St. Olav's Hospital, Trondheim University Hospital
Background Background cont’d Nursing Genetics and The Nursing Role My Country My Country cont’d genomics in Norway (officially the Kingdom of Norway has both administrative Nursing is one of the 30 Norway) is a sovereign and unitary and political subdivisions on two professional groups that is healthcare monarchy whose territory comprises levels: counties and municipalities. regulated by law and requires Specialist services the western portion of the The country has the fourth-highest authorisation by the Directorate for Medical genetics services in Scandinavian Peninsula plus the per capita income in the world on Health and Social Affairs. To apply Norway are well established. For island Jan Mayen and the the World Bank and IMF lists. for authorisation as a nurse in example, the Center for Medical archipelago of Svalbard. Norway you must have a degree in Healthcare in my country Genetics and Molecular Medicine general nursing. Norway does not (MGM) in Bergen is a department Norwegians are insured by the have an authorisation scheme for that provides the Western Norway National Insurance Scheme. This is specialist nurses, and they do not Health Authority´s medical a universal single-payer health need a license. genetics service functions. These system funded by general tax Nurses are employed in a number functions include genetic revenues. Children aged sixteen or of types of institution. The most assessment, testing and genetic younger, and pregnant and/or common are hospitals and local counselling of individual patients, nursing women are given free authority health and care services, persons at risk, families with healthcare regardless of any tax hereditary diseases and prenatal Norway has a total area of 385,252 e.g. care homes, nursing homes, payment requirements. home nursing, school health diagnostics. Norway has one of square kilometres (148,747 sq mi) the highest ratios of genetic staff and a population of 5,213,985 (May Norway has a primarily publicly run services and public health centres. health sector, divided into four per million of population in 2016). 83.7% of the population are Europe. Norwegian. regions, each responsible for the Education and Training hospitals in their region. In addition Nurse education was integrated Genetic Counsellors first worked The country has the fourth-highest local municipalities are responsible into higher education in 1983. The for nursing homes, care centers for Bachelor of Nursing programme is as a specialist professional group per capita income in the world on in Norway in 1990. There is a the World Bank and IMF lists. elderly and people with disabilities, 3 years full time and is the regular school health services and health route to qualification as a nurse. specific governing legal framework stations. Although most hospitals Pathways to Master’s degrees and for Genetic Counsellors and The country maintains a specific education programmes for combination of market economy are public, there are a small PhD are also available. number of private hospitals. registration. Norway also has its and a Nordic welfare model with Nurses in Northern Norway can own Norsk Interessegruppe for universal health care and a study part-time over 4 years in Genetiske Veiledere [Norwegian comprehensive social security rural off-campus locations through National Association of Genetic system. the Decentralised Nursing Counsellors]. Education system.
Resources Policy Initiatives Key Challenges Areas for Action The Norwegian Biotechnology A major policy initiative published in Climate and geography create To be discussed. Advisory Board is an independent 2016 is The Norwegian Strategy for challenges for equality of provision of body consisting of 15 members municipal health services across appointed by the Norwegian Personalised Medicine in Healthcare Norway. government. Each has expertise in 2017-2021. This has 3 main aims: modern biotechnology. The main 1. Our healthcare service provide high-quality Other challenges to be discussed. tasks of the Board are to: and relevant information and guidance on • evaluate the social and ethical consequences personalised medicine of modern biotechnology 2. Our healthcare service will implement • discuss usage which promotes sustainable Top Priorities personalised medicine as part of its services, development. My Views The NBAB publishes the free, and organisation of services and building of To be discussed. infrastructure will take place in nationally quarterly journal GENialt in coordinated processes Norwegian. In addition it provides 3. Our healthcare service will contribute to background information on various research and development as well as modern biotechnology topics and innovation in the field of personalised organises several public conferences medicine, both nationally and internationally. annually.
http://www.bion.no/english/ https://helsedirektoratet.no/legemidler/pers ontilpasset-medisin
To discuss this poster, please contact [email protected] . [Insert[Inserseererttp picturepicticictctuururerere off yoyyourouru Global Genomics Nursing Alliance (G2NA) country’scououuntnttrry’sy’y’ss flag:ffllaagag:g:g heightheheighigighght 7cm]7cm7c7 m] Accelerating the integration of genomics into everyday practice G2NA Country representative PAKISTAN HUSSAIN JAFRI
Healthcare in my country Background The public sector delivers 25% of Nursing Genetics and My Country health services, whereas 75% is genomics in Pakistan is the sixth most populace delivered by the private sector. The The Nursing Role country in the world with a public sector provides free There is a lack of Nurses in healthcare population of around 200 million consultation and treatment, Pakistan. Currently there are people. It is situated in South Asia, however, patients may be required 70,969 nurses registered with the sharing boarders with Afghanistan to pay for the cost of some of the Pakistan Nursing Council, the (south west), Iran (west), China diagnostic tests as well as national registration body. (north), India (east) and Arabian medicines. Nurse: physician ratio is 1: 2.5 Specialist services sea in the south. Over 95% of Nurse: Patient ratio is 1: 50 The health system in Pakistan lacks Pakistanis are Muslim and Urdu is organized genetic services. The Education and Training the national language. services available are mostly Nurses are educated in hospitals , based in the private sector. following a three year Punjab Thalassaemia Prevention undergraduate program and one Programme is the first In the private sector, patients have year Midwifery training. Recently, comprehensive specialist genetic to make out-of-pocket payments a four years Degree program has service provided through the made directly to the health care also been introduced. public sector. provider. The private healthcare Nurses are not involved in the system is poorly regulated, which Post-graduation and specialization available in the disciplines of provision of genetic services in has resulted in varying standards of Pakistan. care i.e. from highly reputed and Nursing education, coronary care nursing, accident and emergency, expensive hospitals in urban areas Mainstream/integrated services paediatric nursing, ophthalmic to small clinics run by unskilled Nurses are not involved in any nursing, neuro science and personnel in both urban and rural other genetic and genomic psychiatric nursing areas. healthcare program (outside specialist genetic centers as well).
Policy Resources Areas for Action Top Priorities Currently no resources available to • Policy intervention: initiatives support nurses to increase their Policy intervention is required to knowledge about genomics. include genomics in nursing practice My Views – • Awareness, as it would help in Key challenges • Resources: highlighting the importance of Policy intervention required to genomics and thus will lead to Thehe PunjabPunjab ThalassaemiaThalassaemia allocate resources for the any policy level intervention. Prevention Programme is an integration of genomics across • Resources, because without initiative of the government of nursing practice adequate financial and other Punjab providing Thalassaemia resources integration of screening and prevention services. • Curriculum: genomics in nursing will not be Inclusion of genomics in nursing possible Based on the success of this • High consanguinity rate leading to curriculum /training • Education & Training, as currently initiative, the government is increasing number of births with nurses are not being educated considering to expand the genetic conditions • Awareness: and trained in genomics screening and prevention services • Low literacy rate Campaign to improve awareness • National and international to other genetic conditions as • Lack of rained health force to and understanding of genomics in collaboration – this is very well. provide genomic services the community important as this collaboration • Lack of resources for genomics in could help in initiating the This programme is also now been the country integration of genomics in given the responsibility to initiate • Lack of evidence of efficacy or nursing training programs for different • effectiveness of genomic • Improved organisation and healthcare provider. Therefore, interventions delivery of healthcare so is there is an opportunity that • Limited access to genetic services required so that it is able to genomic training for nurses could • No recognition of Nurse’ role in incorporate genetics and be initiated through this program. genomics genomics
Contact [email protected] for more information or to discuss this poster further. [Insert[Inseserserert picturepicture ooff yyourour Global Genomics Nursing Alliance (G2NA) country’scoucocouountry’syyss flag:flflag:a heightheight 7cm]7cmcmm] Accelerating the integration of genomics into everyday practice G2NA Country representative SOUTH AFRICA Prof Hester C. Klopper, Stellenbosch University, Cape Town
Background Nursing Genetics and Policy genomics in healthcare My Country The Nursing Role Specialist services initiatives The Republic of South Africa (RSA), Nurses constitute 75% of the health There are well organised but small The Policy Guidelines for the is the southernmost country in professions, with a total of 382048 in genetic services, based mostly in Management and Prevention Africa. RSA in the 25th-largest 2015 across all categories of nurses. academic centres, provincial health of Genetic Disorders, Birth Defects country in the world by land area, Nurses departments and the NHLS. Trained and disabilities were published by with 56 million people. The provide the bulk of the bulk primary medical geneticists, genetic the Department of Health country has a diverse and multi- health care but is part of the health counsellors and medical scientists in 2001. This shoed an increasing ethnic population, and is often care team in all settings. The South deliver the service. Very few nurses commitment by government to called the rainbow nation, with African Nursing Council is the are part of this system. engage in providing more genetic eleven official languages. statutory regulating body that services. This guideline stipulated Mainstream/integrated services controls all registrations. the need for training of medical Key genetic services are available and geneticists, genetic counsellors Education and Training are mainly provided at tertiary care and laboratory scientists to meet Nurses have the option to enroll at level, and include: prenatal genetic the needs of the population. university for a 4 year degree, or diagnosis; diagnostic, predictive and through a public nursing college for a carrier testing; and genetic Healthcare in my country The number of posts supported by 4 year Diploma. Both leads to counselling services. Neonatal RSA has a dual health system. The the NHLS and provincial registration as a professional nurse. screening for metabolic conditions is public health system caters for governments increased in the Training are integrated and prepares available from a few private 80% of the population – services early 2000s. However, a debate on the individual in General Nursing, laboratories, pre-implantation genetic are rendered for free or at a who is responsible for the service Midwifery, Community Health and diagnosis, and pharmacogenetic minimal fee. 20% of the delivery (NHLS/NDoH) of Psychiatry. Nurses need to complete testing. No genetic services are population pays for private health provincial DoH, has continued and at least 300 hours of practica over available in the rural areas. However, insurance and use the private led to the slowing down of the four years. Nursing is offered up genetic testing is available once hospital system. development of these services. to doctoral level referred.
Resources Key challenges Areas for Action Top Priorities Several Universities offer courses in Challenges in South Africa are: Genetics and Genetic Counselling. • Availability of services to the total Create opportunity for a national My Views – Some examples: population engagement on national policy and • Creating an awareness and the implementation across Government buy-in for a drive Stellenbosch University literacy through health provinces towards policy implementation at BSc Genetics; BSc Human Genetics, information programmes all levels of healthcare MSC Genetics and PhD Genetics • Establishing genetics and National debate on genetic services, http://www.sun.ac.za/english/facul genomics as a speciality area for genomic testing, and data security Programmes and services to be ty/agri/departments1/genetics nurses available to all of the population • Integration of genomics into Education of health professionals, undergraduate health professions both at undergraduate and Health professions education curricula postgraduate level University of the Witwatersrand - . • Education of health care Collaboration between the MSc (Med) Genetic Counselling professionals to be able to provide Education of nurses to specifically different health care http://www.humangenetics.uct.ac. information and services to the provide relevant health information professionals za/hg/teaching/msc/courses) public • Commitment from government to Establish public awareness Campaign to create public engage in discussions about the campaigns, develop material for awareness, inclusive of public University pf Pretoria – accessibility of services and care health information sharing and education BSc (Genetics); BSc (Human for all, and to take responsibility generate opportunities to share Genetics); MSc and PhD in on a national level for policy information to the public Genetics implementation http://www.up.ac.za/en/genetics/a rticle/19916/academic- programmes
Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative: Switzerland Andrew Dwyer, PhD, FNP-BC University of Lausanne Institute of Higher Education & Research in Healthcare Centre Hospitalier Universitaire Vaudois (CHUV)
Background Nursing Genetics and Policy My country The Nursing Role genomics in initiatives Federal republic (26 cantons) #1 per capita nurses: 17.4/1,000 41,285 km2 (15,940 sq mi) (OECD avg = 9.1) healthcare Office of Public Health is currently Pop: 8.2M, 4 official languages defining competencies for nursing Play major role in providing care: Specialist services Life expect: ƃ 80.4, Ƃ 84.7 yrs (BS & MS) yet is not defining APN -hospitals Testing: widely available roles or scope of practice. Also in German - nursing homes - commercially 70% process: National Strategy for - home health organizations - academic medical centers French Romansh - reimbursed by insurance Cancer, criteria for rare disease 26% Nurse skill mix: <1% Counselling: centers of excellence. practical nurses - available at academic centers 26% The Bigger Picture 53% - counsellors from France or UK nurses Given the large role of the Italian 21% - significant need & shortage 4% nurse aides Pharmaceutical industry in Mainstream/integrated services Switzerland, there is growing Healthcare in my country Currently no national certification genetic/genomic activities widely attention to pharmacogenomics: APN roles are in their infancy integrated in academic centers Cost: 11.4% GDP - per capita The Swiss National Science nd - cancer spending 2 only to the USA Education and Training Foundation has funded/continues - cardiovascular/lipids - 49% inpatient diploma training until 1990s to fund large research platforms - infectious disease - 29% ambulatory BS: Universities of Applied Science for genomic research: - endocrinology/metabolism - 12% pharmaceutical MSc: introduced in 2000 (CNS) - cohorts (CoLaus) & biobanks Structure: Individuals obliged to PhD: introduced in 2004 * Nurses not currently widely - sequencing platforms - bioinformatic infrastructures purchase insurance policies from Only 1 genetics/genomics course engaged in these activities – if so, (SIB, Vital-IT) private companies. (4 ECTS) offered - masters level largely in informal roles
Resources Key challenges Areas for Action Top Priorities Nursing education Connect successful nursing leaders My Views – • Attitudes/perceptions Nurses do • Identify pioneers & leaders to An aging population is the most not see genetics/genomics as highlight nursing contributions to Masters level genetics/genomics pressing Swiss health need. For applicable to clinical nursing care, genetics/ genomics course offered by Unibas (4ECTS) genetics/genomics we need to: practice or research • Develop international networks Cascade initiative • Knowledge & training insufficient Establish novel APN roles to: Develop a critical mass of APNs (Pr. M. Katapodi) education in biology & genetics/ • provide family-centered • Systematically promote genomics at the bachelor level genetic/genomic care, education in genetics/genomics at • Integration of genetic/ genomic communicating familial risk, 2016 summer School all levels of education & training education is not systematic across promoting effective coping for “Genetics and the • Involve nurses in genetic/genomic MS programs living with a genetic condition Science of Symptom practice initiatives & research and long-term follow-up and Management” Nursing practice framework • Identify viable career paths for surveillance of at-risk relatives • Fragmented regulatory bodies nurses in the Swiss health system • inter-professional collaboration Swiss Society of • Recognition lacking for APN roles • Promote policy change at the with clearly delineated roles & Medical Genetics • Reimbursement currently limited canton & federal levels www.sgmg.ch responsibilities to avoid Health policy framework Establish & solidify APN roles competition/conflict Swiss Group for • Paternalistic legacy: physician- • Ensure competency-based • expand participation of nurses Clinical Cancer centric, treatment-oriented education & training APNs in genetic counselling roles Research • Legal framework needed i.e. title • Identify & respond to stakeholder Foster current nursing roles www.sakk.ch recognition, regulation, needs for genetics/genomics • identify exemplars & potential certification and reimbursement • Advocate for legislation i.e. title career mentors for new trainees Swiss Cancer League: www.krebsliga.ch • Decentralized services at the protection & certification • consolidate existing expertise canton level make federal • Lobby for reimbursement in a national network initiatives challenging • create succession plan: recruit Æ train Æ mentor Æ promote
Contact [email protected] for more information or to discuss this poster further. [Insert[Insersseererttp picturepictuure ooff yyourour Global Genomics Nursing Alliance (G2NA) country’scountrt y’sys flag:flaag: heightheight 7cm] Accelerating the integration of genomics into everyday practice G2NA Country representative Taiwan Lian-Hua Huang, RN, EMBA, PhD, FAAN
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[Insert picture of your Global Genomics Nursing Alliance (G2NA) country’s flag: height Accelerating the integration of genomics into everyday practice 7cm] G2NA Country representative 896/)= RN. PhD. Assist. Prof. Memnun SEVEN, Koç University School of Nursing Background Nursing Genetics and Policy The Nursing Role My Country Nightingale’s work in Turkey is often cited as the genomics in The Republic of Turkey, is a parliamentary republic in beginning of modern nursing. According to the Initiatives Eurasia. Nursing law effective since 2007, nurses are Turkey’s population is nearly 79 million people in authorized to: (a) implement any treatment assigned healthcare There are no initiatives specifically led 2016. Turkey has an average population density of 97 in writing by a physician (with an exception providing Specialist services by or aimed at nurses in genetics health people per km². People within the 15–64 age for a non-written treatment during an emergency), There are 57 registered genetic centers in Turkey and care in Turkey. group constitute 67.4 percent of the total population; (b) determine the health-related needs of the to our knowledge there are no nurses working in while senior citizens aged 65 years or older make up individual, family, and community that can be met genetic centers or working with the title of genetic 7.3 percent. The largest city in Turkey, Istanbul, is also through nursing, and (c) plan, implement, supervise, nurse in other healthcare settings. Although some Counseling for families at risk of genetic the largest city in Europe in population, and the third- and evaluate nursing care within the framework of graduate nursing programs include genetics courses, conditions is now a responsibility of largest city in Europe in terms of size. needs identified by the nursing diagnostic process. there is no undergraduate nursing program in Turkey in which genetics is specifically included. women's health nurses, according to Healthcare in my country Nurses in Turkey are not well informed, nor do they amendments to the Turkish nursing The Ministry Of Health Is The Main Government Body Education and Training play an active role in genetics. Nurses need additional regulations that came into force on Initial education for nursing must be offered in an Responsible For Health Sector Policy Making, training in genetics so they can assume their potential April 2010. Implementation Of National Health Strategies Through undergraduate program within a university. Nurses roles in the field. Programs And Direct Provision Of Health Services. who hold a baccalaureate degree in nursing can work Health care in Turkey used to be dominated by a as a “specialist nurse” after they complete graduate Mainstream/integrated services Genetic counseling is also one of the education and specialize in a given clinical area. centralized state system run by the Ministry of Health. University and private hospitals and genetic centers nursing interventions that can be Following graduation from a baccalaureate program, In 2003, the government introduced a sweeping health offer genetic testing and counselling led by geneticist nurses receive an authorization document which undertaken according to either the reform program aimed at increasing the ratio of private and genetic counsellers who have a biology allows them to practice within a given framework of to state health provision and making healthcare background. nurse's own clinical decision or on the standards that is determined at the unit level, based available to a larger share of the population. Clinical Cytogenetics; There are approximately 70 order of a physician. on the care required by patients in a specific unit, for The Social Security System is to make sure everyone cytogenetic laboratories in Turkey in the private sector example occupational health, emergency care, stoma has access to minimum health care. In 2014, there and at universities. care, and diabetes care, as determined by the This regulation indicates that Turkish were 1.528 hospitals in Turkey, 251 nurse/ midwife Molecular Genetic Testing; In addition to Ministry of Health. The revised law also states that and 175 physician for 100 000 residents. hemoglobinopathies, a high volume of genetic tests nurses do not have any legal restriction nurses’ authority and responsibility will be are done for phenylketonuria (PKU), cystic fibrosis (CF), to undertake genetic healthcare and to determined by their educational level. Becker/Duchenne muscular dystrophy (B/DMD), spinal educate to their clients in every setting. muscular atrophy (SMA) and FMF. The Council of Higher Education is responsible for the planning, coordination and supervision of higher Even though there is a licensing procedure through the education. MOH for genetic testing labs, there is not yet a 9High-school diploma program, laboratory accreditation and certification system for 9The baccalaureate science (BSN) degree programs genetic testing. There are no national laws or legal in nursing guidelines specific for bio banks. Generally, 9Master of Science (MSc) in Nursing (1968) international guidelines are followed for genetic 9Doctor of Philosophy (PhD) in Nursing (1972) studies, for example informed consent is required from subjects for bio banking and for genetic testing. Resources Key Challenges Areas for Action Top Priorities There are no sources to support specifically nurses in practise Education Education My Views regarding genetics in Turkey. 9 Lack of awareness among nurses 9 To create awareness among nurse Education is the biggest priority now for regarding genetics faculty and graduate nurses nurses and nursing faculty to train No courses, websites or other 9 Lack of faculty who are able to teach 9 To train nurse faculty other nurses and integrate genetics into learning resources in Turkish are nursing students in genetics. 9 To train graduate nurses the nursing curriculum. available to Turkish nurses. 9 Lack of resources and courses for 9 To integrate genetics into Public education to create awareness, graduate nurses who want to learn undergraduate nursing education Only some genetic courses are and improve their ability regarding and to become involved in public available for graduate nursing genetics services. Research awareness campaigns and take students (Master and PhD level) in 9 To collobrate with researchers in opportunities to educate patients and a few school of nursing in Turkey. Research nursing genetics services the public, wherever possible. 9 Lack of research conducted by 9 To fund research in genetics nurses conducted by nurses To support graduate nursing students 9 Lack of resarch experience for nurses 9 To support graduate nursing by giving them training and research who want to be part of or involved in students in doing research in opportunities in genetics with genetics. genetics collaboration with international university where nursing faculty teach Practice Practice 9 Other healthcare professionals’ To ensure quality of care it is essential genetics. In that what we may: attitudes towards nurses who wish to improve awarnesses and ¾ improve nurse faculty and graduate to be involved (to conduct research) competencies of nurses in genetic nurses’ awareness in genetics in genetics health services. knowledge. ¾ enhance genetic courses in graduate curriculum for nursing students. Contact [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Country representative United Kingdom Professor Heather Skirton, Plymouth University, UK Background Nursing Genetics and Policy My Country The Nursing Role genomics in Initiatives The United Kingdom includes Nurses are the largest profession The UK government has embraced England, Scotland, Wales and in the NHS, with 315,000 healthcare genetics and genomics. A White Northern Ireland. employed in 2016. Nurses are Specialist services Paper in 2003 signalled the start The population integral to all acute and The UK has a network of regional of considerable funding and is 64 million. The community services. genetics centres, mostly based in support to bring the benefits of majority ethnic university hospitals. All citizens genetics/genomics into group is White Nurses and midwives are therefore have access to their mainstream healthcare. British (87.1%), statutorily controlled by the regional services but should be Today, Genomics England (a with Asian the Nursing and Midwifery Council, referred by the GP. company owned by the next largest (6.9%). the national registration body. Regional genetic clinical services Department of Health) is set up to Healthcare in my country Education and Training are provided by medical deliver the 100,000 genomes Healthcare is largely provided by Nurses are educated in geneticists and registered genetic project to develop a database of the National Health Service (NHS), universities, usually following a counsellors, many of whom are genomes to supportpp research and paid for by taxation and free at the three year undergraduate nurses by background. better caree in tthehe NHNHS.S. point of service. Most people programme. At least 50% of the Mainstream/integrated services value the NHS and trust NHS staff. programme must be spent in Specialist nurses are very much Citizens are registered with one clinical practice. Student nurses involved in genetic and genomic general practitioner (GP), who has can choose one of four pathways: healthcare outside specialist In addition, Masters level overall responsibility for their Adult, Child, Learning Disability or genetic centres. They do, for education in genomics for a wide healthcare and makes appropriate Mental Health. example, provide genetic risk range of NHS staff in England is assessment and testing in cardiac being financed by the referrals to secondary and tertiary Midwives (approx. 27,000) are care. There is little private and oncology services. government, overseen by the educated separately through 3- Genomics Education Programme. healthcare. year undergraduate programmes. Resources Key Challenges Areas for Action Top Priorities There are some excellent genomics I think we are confused about the • Education of health My Views – education resources freely nature of genomic information. We professionals, including nurse available online in the UK. Some need to make decisions about how leaders. Nurses need to educate Public education, because examples below. we will treat genomic information themselves and also to teach and without education, discussion on within our culture. Is it private and encourage others. https://www.genomi policy is less meaningful. confidential or should we be more cseducation.hee.nhs. • Become involved in public uk/ open about it? Is it personal, familial awareness campaigns and take Professional education. or societal information? opportunities to educate The key challenge highlighted by patients and the public, many clinicians and researchers is wherever possible. https://www.genetic the education of professionals. alliance.org.uk/ • Be involved in national Unless and until health professionals discussion of management of are aware of both the benefits and additional findings and agreed limitations of genomics, then the Policy decisions regarding uses of policy for dealing with these. https://www.primar public will not have access to genomic information in health ycaregenetics.org/ opportunities that may improve their • Be involved in national care. health and well-being. discussion of use of genomic testing, for example in newborn Public discussion on nature of http://www.yourgenom Another key challenge is raising genomic information. This is a e.org/ period and in pregnancy. genomic awareness and literacy in broad sociological rather than a the general public. Some of the • Discussion on where genomic health question, but use of social issues raised by increasing use of information sits within our media has generated more genomics in healthcare require culture – is it private and special openness in other areas. www.tellingstories.n national conversations and decisions, hs.uk/ or should it be part of the but without proper awareness of general knowledge we have genomics, these are not possible. about ourselves and our families? Prepared by Heather Skirton. To discuss this poster, please contact Maggie Kirk, Chris Patch or Caroline Benjamin. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice United States of America Laurie Badzek, LLM, JD, MS, RN, FAAN Kathleen Calzone, PhD, RN, AGN-BC, FAAN University of North Carolina, Wilmington National Cancer Institute Background Nursing Genetics and Policy Initiatives Genomics in Federal Legislation United States of America # of Nurses in US: > 3.6 million* Healthcare 2008-Genetic Information Non- • Population: 300,000,000+ Multiple Providers Discrimination Act (GINA) Federal Government Funding • Government at both Federalal & Geneticists 2015 - Precision Medicine State Levels Specialty Physicians (i.e. oncologists, obstetrician/gynecologists) Initiative (PMI) Role of Pathologists • $215 million to support Nurse Genetic counselors research for advancement Physician Assistants of individualized medicine Pharmacists • Does NOT include Nurses Credentialed in Genetics increasing provider genomic competency National Health Expenditures*s* Inter-Society Coordinating Committee Genetic/Genomic Nursing • 2015 - $3.2 Trillion ($9,900/person) for Practitioner Education in Genomics Competency established by Education and Training (ISCC) Consensus Panels Aim: Improve genomic literacy of physicians and other practitioners and to enhance the practice of genomic Advanced Practice Nurse medicine through sharing of Doctor of Nursing Practice Certified Registered Nurse Anesthetist Clinical Nurse Specialist educational approaches and joint Clinical Nurse Practitioner Certified Nurse Midwife identification of educational needs. https://www.genome.gov/27554614/intersociety-coordinating- committee-for-practitioner-education-in-genomics-iscc/ Research *American Nurses Association, 1/2017 www.nursingworld.org Genomic Nursing Science Blueprint *Centers for Medicare & Medicaid Services (1/2017) www.cms.gov • OMICS Nursing Science and Education Network (ONSEN) Key Challenges Areas for Action Top Priorities Genomics is a Complex Competency Goal: Translating genomic Awareness Most genomic outcomes are not observable Competent genomic integration optimizes information and technology Interprofessional awareness therapeutic interventions or reduces negative into education and practice campaign outcomes (i.e. drug adverse events or • Many healthcare providers do decreased in disease risk) Preconception/ not recognize application or • Lack of observability slows adoption Prenatal relevance to practice rates After End Evidence Generation Of Life Newborn Education/Competency Evidence that utilization of genomics improves Screening Academics healthcare quality, safety, and decreases costs • Faculty capacity Policy Management Not all individuals using genetic/genomics testing or Of Symptoms Risk • Training programs services protected from discrimination by federal Identification Practicing providers legislation (Genetic Information Non-Discrimination • Incentives to increase genomic Act [GINA]) Individualized competency (i.e. Continuing Incidental findings Therapy Screening/ Diverse workforce education at the time of re- Diagnosis Interprofessional workforce Disease licensure Varied levels of education, role, and scope of Characterization • Clinical training programs practice Infrastructure Funding No funding has been allocated to expansion of Action Areas: Electronic health record capacity genomic competency among faculty or workforce Interprofessional collaboration Point of care decision support Competing demands • Cross cutting themes from each Ongoing changes in insurance coverage disciplines competencies Access to Services Varies based on region of the country Genomic application across the Inadequate numbers of providers with genomic healthcare continuum capacity in the country to meet the demand Poster adapted from US ISONG poster developed by Contact [email protected] for more Kelliann Fee-Schroeder, BSN, RN, OCN information or to discuss this poster further. The Organisations Genomics Education Programme (Health Education England) International Society of Nurses in Genetics Sigma Theta Tau International Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Organisation representative HEE Genomics Education Programme Dr Anneke Seller, Scientific Director, Genomics Education Programme Sue Hatton, Senior Nursing Policy Manager, Health Education England About us Goals Membership Projects The core goals of the GEP are: The GEP has adopted a network approach to achieve these goals, • Support staff in NHS England working with: Genomic Medicine Centres Health Education England (HEE) is working on the 100,000 Genomes Project. the national leadership As part of HEE the GEP is one of organisation for education, the organisations key projects. training and workforce development in the health sector. As a programme our key projects • HEE’s Genomics Education Increase workforce capacity • 13 funded education and are: Programme (GEP) was established and capability in training leads based at Genomic key areas of genomic Medicine Centres located • Developing genomic education in 2013 in response to the 2012 resources report ‘Building on our medicine. throughout the NHS. inheritance’.1. • 32 Education and Training leads • Ongoing delivery of the within Genomics England's Masters in Genomics Medicine Based in Birmingham, the GEP is a Clinical Interpretation • Maintaining and facilitating the national programme and is the Partnerships. NHS’s method of ensuring its staff • 10 Higher Education Institutions relationship with our membership networks have the knowledge, skills and • Provide a lasting legacy so (HEIs) delivering our national experience to ensure that the that genomic medicine is MSc in Genomic Medicine. • Wider workforce health service remains a world embedded in the patient • Over 550 Genomic Faculty transformation leader in genomic and precision members within the NHS. pathway. • Measuring our success medicine. Funded by the GEP to undertake the MSc in Genomic • Research and Innovation Medicine and act as Clinical Champions in the NHS. Resources Key challenges Areas for Action Top Priorities Our priorities for the next 12 The statements below relate directly • Round table – we have organised The GEP is developing a range of months: to the key GEP challenges for the a round table meeting involving educational resources tailored to Nursing and Midwifery work stream: senior nurse leaders across the specific needs within the • Developing training and learning arms length bodies, Royal workforce, including Nursing and resources in a timely manner to • Engaging key stakeholders Colleges and professional Midwifery. support staff delivering the organisations. 100, 000 Genomes Project. • Integrate nationally recognised • Increasing awareness through These include: • Identifying the educational standards into formal academic various channels including: social needs of the wider clinical based education media (@WeNurses), attending • Short online courses workforce in genomics by nursing conferences and conducting a training needs • No formal requirement for developing easily accessible • Training Tools analysis. assessment in genomics in order educational resources. • Providing the evidence for to practice • Working with key stakeholders • ‘Just in time’ resources workforce planning to ensure to develop and integrate future capacity in the specialist • No clear career pathways in nationally recognised standards • Workshops and events workforce. genomics for Nurses and into formal training programmes. • Broadening our reach into key Midwives • Developing resources to support • Videos, images and curricula. the educators delivering these animations • Measuring our impact and • No consensus on patient standards. demonstrating return on pathways • Working with NHS England to • Master’s in Genomic investment. define the patient pathway and Medicine • A cultural shift of the role of the expected role of Nurses and All of these priorities will include Nurses and Midwives in genomics Midwives. the Nursing and Midwifery • Exploring new roles in specialist workforce both as stand alone • Capacity and capability of Nurse and advanced practice. and Midwifery educators to teach professions and as part of the wider integrated workforce. the subject area 1Building on our Inheritance. Genomic technology in healthcare. A report by the Human Genomics Strategy Group. 2012 Department of Contact Health, UK. [email protected] for more information or to discuss this poster further. Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Organisation representative: International Society of Nurses in Genetics Elizabeth Pestka, Mayo Clinic, Rochester, MN, USA, ISONG President 2016-2017 About ISONG Goals Membership Projects Global community Established in 1988 1. Build and sustain a vibrant Total members: 325 • Annual international congress international community for Funded from member dues & • November 3-5, 2017 the development of nurses in Representation from 16 countries: profits from educational offerings genetics and genomics in 1. Australia • Educational webinar series Home office in Pittsburgh, PA, USA relation to education, research 2. Belgium • Professional practice resources and professional practice. 3. Brazil Our vision: Caring for people’s Integration 4. Canada • Ethics and public policy position genetic and genomic health 2. Promote the integration of 5. Columbia statements throughout the lifespan and across genetics and genomics across 6. India the continuum of health and • White paper on GINA nursing education, research 7. Israel disease. and care at all levels of 8. Italy • Position statements: Our mission: To serve both the professional practice through: 9. Japan +Genetic Biobanking nursing profession and the public. • Promoting engagement of 10.New Zealand +Newborn Screening ISONG fosters and advocates for nurses; 11.Saudi Arabia +Informed Decisions the scientific and professional • Sharing expertise and 12.South Africa +Access to Genomic Care development of its members and best practice; 13.South Korea +Privacy & Confidentiality the nursing community, in the • Supporting professional 14.Switzerland +Genetic Counseling discovery, interpretation, development. 15.United Kingdom +Direct-to Consumer application, and management of Leadership 16.United States +Quality Genetics Services 3. Demonstrate and promote genomic information, for the • Promotion of nursing research leadership in the development promotion of the public’s health in genetics and genomics and wellbeing. ISONG advocates and implementation of for public understanding of standards of healthcare • Research grants & genomic health and use of practice in genetics and publications genomic information. genomics for the benefit of patients and families. Resources Key challenges Areas for Action Top Priorities 1. SmallSmall membership.membership. Education For ISONG priorities focus on • Nurses at all levels growing the organization and • Public promoting relevant activities: http://www.isong.org Professional practice 1. More visibility for nurses, 2. Small budget. • Integration into all nursing other healthcare professionals practice and the public; 2. Increasing membership of the Research to establish evidence of organization; better outcomes when 3. Increasing activities of the 3. Reliance on members to genetics/genomics included in organization to promote the volunteer time and effort for nursing care mission and goals. organizational activities. If interested in becoming a member: 4. Focus has been on nurses http://www.isong.org/index.php specializing in genetics with a challenge to broaden the scope to include all nurses including genomics in their care. [email protected] Global Genomics Nursing Alliance (G2NA) Accelerating the integration of genomics into everyday practice G2NA Organisation representative Sigma Theta Tau International Cathy Catrambone, PhD, RN, FAAN President 2015-2017 About STTI Goals Membership Initiatives Vision: To be the global Goal 1: • STTI membership is organization of choice for nursing. Grow in value for members and baccalaureate and higher nurses worldwide. Mission: Advancing world health degree students and nurses. and celebrating nursing excellence Goal 2: STTI has more than 135,000 in scholarship, leadership and Promote and celebrate nursing active members. service. scholarship, leadership, and Members reside in more than 90 Core values: Diversity, integrity, service. countries. collaboration, excellence, 39 percent of active members knowledge, leadership and Goal 3: hold master’s and/or doctoral tradition. Build partnerships and degrees; 51 percent are in staff collaborative endeavors to positions; 19 percent are History: In 1922, six students advance the mission of the administrators or supervisors; founded the Honor Society of society. Nursing, Sigma Theta Tau 18 percent are faculty/academics; and 12 International (STTI) at the Indiana Goal 4: University. The founders chose the Sustain and advance the resources percent are in advanced name from the Greek words, that of the society. practice. mean love, courage, and honor. There are roughly 515 chapters at more than 700 institutions of higher education and 28 Website: www.nursingsociety.org countries. Resources Publications Small grants Journal of Nursing Scholarship is a leading peer-reviewed scholarly publication with a global circulation Education and research conferences of 125,000. It is published bimonthly and is available in both print and full text searchable online formats to Online continuing nursing members and subscribers. education Worldviews on Evidence-Based The Virginia Henderson Global Nursing™ is a bimonthly periodical Nursing e-Repository is a digital that is available in print and full text service that collects, preserves, and searchable online formats to disseminates materials in both subscribers. It is a leading global abstract and full-text format. source of the best research and Submissions by individual nurses evidence available, with applications and students as well as nursing to nursing practice, administration, organizations are welcome. education, and policy. Reflections on Nursing Leadership is STTI's award-winning online member magazine that communicates nurses' contributions and relevance to the health of people worldwide. Books: approximately 14 published each year. Contact [email protected] for more information or to discuss this poster further. G2NA Project Team Dr Kathleen Calzone, PhD, RN, AGN-BC, FAAN (Co-lead) Research Geneticist National Cancer Institute, Center for Cancer Research-Genetics Branch, USA Professor Maggie Kirk, PhD, BSc Hons, DipN, RGN, FRCN, SFHEA (Co-lead) Professor of Genetics Education, Genomics Policy Unit University of South Wales, UK Professor Laurie Badzek, MS, LLM, JD, RN, FAAN Professor and Director School of Nursing University of North Carolina Wilmington, US Dr Caroline Benjamin, PhD, RGN, RGC, BSc, MSc Guild Senior Research Fellow – Health, University of Central Lancashire, and Genetic Counsellor, Merseyside and Cheshire Clinical Genetics Service, UK Dr Anna Middleton, PhD, MSc, RGC Head of Society and Ethics Research Group, Wellcome Trust Sanger Institute, Genome Campus, Cambridge, and Vice-Chair, Association of Genetic Nurses and Counsellors, UK Dr Emma Tonkin, PhD, BSc Hons Senior Research Fellow Genomics Policy Unit University of South Wales, UK G2NA participants Designation Naoko Arimori Professor of Nursing, Niigata University Japan; Board member, Japanese Society of Genetic Nursing Sivia Barnoy Associate Professor, Tel-Aviv University, Israel Inga Bjørnevoll Head of Medical Genetics, St Olavs, Trondheim, Norway Cathy Catrambone President, Sigma Theta Tau International Sek Ying Chair Director and Professor, Nethersole School of Nursing, Chinese University of Hong Kong, China Andrew Dwyer Assistant Professor, Lausanne Institute of Higher Education and Research in Healthcare, Switzerland Mary Jane Esplen Professor and Vice-Chair, Department of Psychiatry, University of Toronto, Canada Sue Hatton Senior Nursing Policy Manager, Health Education England Lian-Hua Huang Professor of Nursing, Taiwan University, Taiwan Hussain Jafri Deputy Project Director Punjab Thalassaemia Prevention Programme, Pakistan Alastair Kent Director, Genetic Alliance UK & European Genetic Network Hester Klopper Deputy Vice Chancellor, Stellenbosch University, South Africa Sascha Köpke Professor of Nursing Research, University of Lübeck, Germany Chris Patch Clinical Lead for Genetic Counselling, Genomics England & President- elect, European Society of Human Genetics Elizabeth Pestka President, International Society of Nurses in Genetics Anja van Rens Genetic Counsellor, Antoni van Leeuwenhoek Hospital; Secretary, Dutch Association of Genetic Counsellors, Netherlands Pilar Amaya Rey Professor, Universidad Nacional de Colombia, Columbia Anneke Seller Scientific Director, Genomics Education Programme, Health Education England Erica Monteiro Santos Scientific Advisor Hospital Siírio-Libanes and Coordinator Hereditary Cancer Registry, Brazil Memnun Seven Assistant Professor, School of Nursing Koç University, Turkey Judith Shamian President, International Council of Nurses Juana Mercedes Professor, School of Nursing, Universidad Autonoma de Nuevo Leon, Gutierrez Valverde Mexico Other participants unable to attend in person John Daly Dean of Faculty, University of Technology/Head of WHO Collaborating Centre, Sydney, Australia Funmilayo Ikeoluwa Assistant Chief Nursing Officer, University Hospital Sokoto, Nigeria Funding The Wellcome Genome Campus Advanced Courses and Scientific Conferences programme hosted the Retreat and Health Education England Genomics Education Programme provided further funding. The project was also supported by the Intramural Research Programs of the National Institutes of Health, National Cancer Institute and National Human Genome Research Institute.