DOCSLIB.ORG

Review of Ethical Issues in Medical Genetics

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text
Review of Ethical Issues in Medical Genetics WHO/HGN/ETH/00.4 Review of Ethical Issues in Medical Genetics Report of Consultants to WHO Professors D.C. Wertz, J.C. Fletcher, K. Berg World Health Organization Human Genetics Programme Human Genetics Programme WHO/HGN/ETH/00.4 Management of Noncommunicable Diseases World Health Organization Review of Ethical Issues in Medical Genetics Report of Consultants to WHO Professors D.C. Wertz, J.C. Fletcher, K. Berg Copyright © WORLD HEALTH ORGANIZATION, 2003 All rights reserved. Publications of the World Health Organization can be obtained from Marketing and Dissemination, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel: +41 22 791 2476; fax: +41 22 791 4857; email: [email protected]). Requests for permission to reproduce or translate WHO publications – whether for sale or for noncommercial distribution – should be addressed to Publications, at the above address (fax: +41 22 791 4806; email: [email protected]). The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. The World Health Organization does not warrant that the information contained in this publication is complete and correct and shall not be liable for any damages incurred as a result of its use. Table of contents PREFACE...............................................................................................................................................................I PART I GENERAL CONSIDERATIONS ......................................................................................................... 1 INTRODUCTION : IMPORTANCE OF GENETICS ...................................................................................................... 1 1. RESOURCES FOR ADDRESSING ETHICAL ISSUES IN MEDICAL GENETICS ........................................................ 1 1.1 Major Ethical Issues in Medical Genetics.............................................................................................. 1 1.2 Needs of Medical Geneticists in the Study of Ethics............................................................................... 2 1.3 Resources for Ethical Guidance ............................................................................................................. 2 1.4 The Special Position of Women and Children ........................................................................................ 6 1.5 Respecting those whose Views are in the Minority................................................................................. 6 2. GENETIC SERVICES IN ETHICAL AND SOCIAL CONTEXT ................................................................................. 7 2.1 Goals and Practices of Medical Genetics............................................................................................... 7 2.2 Application of Ethical Principles to Genetic Services............................................................................ 7 2.3 Facilitating Individual/Couple Choices Regarding Parenthood ............................................................ 7 2.4 “Is Medical Genetics Eugenics?” ........................................................................................................ 10 2.5 Voluntary Approach Necessary ............................................................................................................ 16 2.6 Need to Avoid Discrimination .............................................................................................................. 16 3. EDUCATION AS THE KEY TO ETHICAL GENETICS SERVICES.......................................................................... 16 3.1 Public Education .................................................................................................................................. 16 3.2 Professional Education: A Team Approach ......................................................................................... 17 3.3 Others Associated with Service Provision............................................................................................ 19 3.4 Clergy ................................................................................................................................................... 19 3.5 Organizations for Affected Families..................................................................................................... 19 3.6 Preventing Stigmatization..................................................................................................................... 20 4. THE CONTEXTS OF GENETICS SERVICES IN HEALTH CARE SYSTEMS ........................................................... 20 4.1 Premarital Genetic Counselling........................................................................................................... 20 4.2 Family Planning ................................................................................................................................... 21 4.3 Preconception Counselling................................................................................................................... 21 4.4 Preconception Care.............................................................................................................................. 22 4.5 Prenatal Care ....................................................................................................................................... 24 4.6 Childhood Care .................................................................................................................................... 24 4.7 Adult Care ............................................................................................................................................ 25 5. PRIORITY OF GENETICS SERVICES IN HEALTH CARE SYSTEMS..................................................................... 25 5.1 Distributive Justice............................................................................................................................... 25 5.2 Cost-Benefit Considerations................................................................................................................. 26 5.3 The Role of Users of Genetics Services in Establishing Policy: Need for Grievance Procedures ....... 28 PART II SPECIFIC SERVICES ....................................................................................................................... 29 1. BASIC PRINCIPLES IN INTERACTIONS BETWEEN PROFESSIONALS AND LAYPERSONS .................................... 29 1.1 Respect for Persons .............................................................................................................................. 29 1.2 Preserving Family Integrity.................................................................................................................. 29 2. GENETIC COUNSELLING ............................................................................................................................... 30 2.1 Counselling Competent Adults ............................................................................................................. 30 2.2 Counselling Children and Adolescents................................................................................................. 36 2.3 Counselling Persons with Diminished Mental Capacity ...................................................................... 36 2.4 Competent Adults who Abdicate Moral Autonomy............................................................................... 37 2.5 Effects of Professionals' Gender........................................................................................................... 37 3. RIGHTS TO REFERRAL .................................................................................................................................. 37 4. DUTY TO RECONTACT .................................................................................................................................. 38 5. SCREENING AND TESTING............................................................................................................................. 38 5.1 Definitions and Requirements for Programmes ................................................................................... 38 5.2 Voluntary versus Mandatory Screening ............................................................................................... 39 5.3 Newborn Screening............................................................................................................................... 39 5.4 Screening in the Workplace.................................................................................................................. 41 5.5 Jobs Involving Public Safety................................................................................................................. 41 5.6 Premarital Screening for Carrier Status .............................................................................................
Load more

Recommended publications
  • Executive Excess 2006 Defense and Oil Executives Cash in on Conflict
    Executive Excess 2006 Defense and Oil Executives Cash in on Conflict 13th Annual CEO Compensation Survey Illustration: Matt Wuerker Co-Authors: Sarah Anderson and John Cavanagh, Institute for Policy Studies Chuck Collins and Eric Benjamin, United for a Fair Economy Editor: Sam Pizzigati Research Assistance: Matthew Paolini, Benjamin Warder, Sarika Sinha, and Daniela Vann Embargoed until: August 30, 2006 IPS About the Authors Sarah Anderson is Director of the Global Economy Project at the Institute for Policy Studies and co-author (with John Cavanagh and Thea Lee) of Field Guide to the Global Economy (New Press, 2005). John Cavanagh is Director of the Institute for Policy Studies and co-author of Alterna- tives to Economic Globalization (Berrett-Koehler, 2004). Chuck Collins is a senior scholar at the Institute for Policy Studies where he directs the Program on Inequality and the Common Good. He was co-founder of United For a Fair Economy. He is co-author (with Felice Yeskel) of Economic Apartheid in America: A Primer on Economic Inequality and Insecurity (New Press, 2005) Eric Benjamin is a Research Analyst at United for a Fair Economy and a candidate for a Masters Degree in Economics at Northeastern University. Sam Pizzigati is an Associate Fellow of the Institute for Policy Studies and the author of Greed and Good: Understanding and Overcoming the Inequality That Limits Our Lives (Apex Press, 2004). He edits Too Much, on online weekly on income and wealth distri- bution. Acknowledgements Art: Matt Wuerker Layout: Alyssa Hassan The authors would like to thank the following individuals for providing valuable com- ments on this report: Charlie Cray, Center for Corporate Policy, and Erik Leaver and Miriam Pemberton, Institute for Policy Studies/Foreign Policy In Focus.
    [Show full text]
  • AMP Molecular Genetic Pathology Recommended Review Books
    ASSOCIATION FOR MOLECULAR PATHOLOGY Education. Innovation & Improved Patient Care. Advocacy. 6120 Executive Blvd. Suite 700, Rockville, MD 20852 Tel: 301-634-7939 | Fax: 301-634-7995 | [email protected] | www.amp.org AMP Molecular Genetic Pathology : RECOMMENDED REVIEW BOOKS Updated: March, 2021 The following books are suggested for those preparing for the Molecular Genetic Pathology board exam administered by the American Board of Medical Genetics and the American Board of Pathology. This list represents the recommendations of the MGP Review Course faculty and the AMP Training and Education Committee; endorsement by the ABMG or the ABP is not implied. GENERAL MOLECULAR PATHOLOGY Thompson & Thompson Genetics in Medicine, 8th edition Nussbaum RL et al., eds. Elsevier, 2015 Molecular Pathology: The Molecular Basis of Human Diseases 2nd edition Coleman WB and Tsongalis GJ, eds. Elsevier, 2018 Diagnostic Molecular Pathology: A Guide to Applied Molecular Testing Coleman WB and Tsongalis GJ, eds. Elsevier, 2016 Molecular Basis of Human Cancer, 2nd edition Coleman WB and Tsongalis GJ, eds. Elsevier, 2017 Molecular Diagnostics: Fundamentals, Methods, and Clinical Applications 3rd edition Buckingham L. ASCP, 2021 Genomic Medicine: A Practical Guide Tafe LJ and Arcila ME, eds. Springer, 2020 CYTOGENETICS Gardner and Sutherland’s Chromosome Abnormalities and Genetic Counseling, 5th edition McKinlay Gardner RJ, Amor DJ. Oxford University Press, 2018 The Principles of Clinical Cytogenetics, 3rd edition Gersen SL and Keagle MB, eds. Human Press, 2013 Human Chromosomes, 4th edition Miller OJ and Therman E, eds. Springer Press, 2000 Vance GH, Khan WA. Utility of Fluorescence In Situ Hybridization in Clinical and Research Applications. Advances in Molecular Pathology 2020; 3:65-75.
    [Show full text]
  • Medical and Public Health Education Public Health Practice and Academic Medicine: Promising Partnerships Regional Medicine Public Health Education Centers—Two Cycles
    Medical and Public Health Education Public Health Practice and Academic Medicine: Promising Partnerships Regional Medicine Public Health Education Centers—Two Cycles Rika Maeshiro rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr The partnering of the academic medicine and public services in academic settings). Although not identi- health communities to improve the health of popula- cal to the Core Functions or Essential Services of public tions seems natural; however, collaboration between health, “education, research, and service” to improve the two groups has not been standard practice. This health appear to be shared objectives in the portfo- series of articles will highlight examples of what are lios of public health practice and academic medicine. hopefully a growing number of successful partnerships This month’s column will review recent collaborations between academic medicine and public health practice aimed at improving medical student education in pop- that are intended to improve health status. Readers are ulation health, focusing particularly on the establish- encouraged to contribute their experiences in public ment of Regional Medicine–Public Health Education health practice–academic medicine partnerships from Centers (RMPHECs). the perspectives of public health practitioners and/or Incorporating prevention- and population-based medical educators. health into the medical curriculum has been a challenge The Association of American Medical Colleges to US medical education for decades. Advocates for im- (AAMC) is a nonprofit association dedicated to improv- proving public health content in medical education be- ing the nation’s health by enhancing the effectiveness lieve that a better-informed physician workforce will of academic medicine. When the AAMC was founded respond more effectively to the needs of their patients, in 1876 to help reform medical education, the asso- their communities, and their public health colleagues, ciation represented only medical schools.
    [Show full text]
  • Conflict of Interest. a Real Or Seeming Incompatibility Between One's Private Interests and One's Public Or Fiduciary Duties
    www.kaplanwalker.com SocietySociety forfor CorporateCorporate ComplianceCompliance andand EthicsEthics ConflictsConflicts ofof InterestInterest inin thethe CorporateCorporate EnvironmentEnvironment Chicago ~ September 13, 2006 Jamie Kogan Rebecca Walker Moody’s Corporation Kaplan & Walker LLP Conflicts Defined Conflict of interest. A real or seeming incompatibility between one's private interests and one's public or fiduciary duties. - Blacks Law Dictionary (8th Ed. 2004) From the company’s perspective: A conflict of interest exists when one’s personal interests interfere in any way with the interests of the Company. SCCE Annual Conference 2006 Overview Conflicts of interest are one of the most complex areas of compliance law • Lack of unified law • Wide scope of activities prone to conflicts • Highly personal context in which conflicts arise • Discretionary nature of transactions • Proclivity for individuals to conceal conflicts of interest SCCE Annual Conference 2006 Background Most of the scandals of the past several years have arisen from conflicts-related issues • Backdating of stock options • Research analysts • Mutual fund scandals • Financial reporting: conflicts between executives and shareholders • Friends and family stock • Corporate directors’ independence issues • Outside auditors’ independence issues SCCE Annual Conference 2006 Managing Conflicts • Scandals demonstrate the need for a proactive approach • Many companies are seeking guidance on dealing with conflicts, including how to: • Recognize • Audit for • Control for
    [Show full text]
  • A Philosophical Investigation of Principlism and the Implications Raised by the Treatment of the Mentally Ill
    Aporia vol. 24 no. 1—2014 A Philosophical Investigation of Principlism and the Implications Raised by the Treatment of the Mentally Ill BENJAMIN FOSTER Introduction he objective of this investigation is to identify reasonable and relevant problems and issues posed for Principlism by the mentally T ill. Two concepts of Principlism will be presented: a normative con- ceptualization of the bioethical theory and a descriptive conceptualization. In reference to both, two philosophical questions will be asked: can we know the natures of other minds and, if so, how? These two questions have theoretical and practical implications for the treatment of the mentally ill. And, in so far as the questions have implications for the treatment of the mentally ill, they have implications for the bioethical theory of Principlism. There is a lack of concurrence on the meaning, nature, and function of mental phenomena, producing conceptual difficulties concerning the common morality that provides Principlism its normative authority. Similarly, a contradiction appears to arise when one considers the imaginative leap of predicting another’s desires, feelings, and thoughts, a maneuver that professionals participating in the treatment of the mentally ill must perform. There is also significant ambiguity surrounding the concept of mental illness, which produces pragmatic problems when professionals attempt to diagnose and treat an individual in conjunction Benjamin Foster graduated with a degree in philosophy and a minor in biology from the University of Alaska Fairbanks. While there he served as president of the univer- sity’s philosophy club, The Socratic Society. His primary philosophical interests include ethics and epistemology. He currently plans to attend medical school.
    [Show full text]
  • Achievement in Medical Education Program (AMEP) Office for Medical Educator Development (OMED)
    Achievement in Medical Education Program (AMEP) Office for Medical Educator Development (OMED) July 2015 Background Academic medical centers embrace the mission to develop future physicians, health-science research scientists, and other health-care professionals who are competent in clinical, research, and educational skills. These centers also have the unique opportunity to provide professional development opportunities towards excellence for faculty, residents, fellows, doctoral students, and post-doctoral scholars with a strong interest in the educational processes that assure these competencies. Through the Achievement in Medical Education Program (AMEP), UNMSOM educators receive professional development and achieve recognition that demonstrates, encourages, and values excellence in teaching across all elements of basic science and clinical education within the School of Medicine. Participants actively engage in learning, applying knowledge, developing skills, reflecting on the process, and developing an action plan for ongoing personal and professional growth as educators. The program includes both Foundational and Advanced pathways: The Foundational pathway contributes toward achievement of basic educator skill (further demonstrated in teaching opportunities). This pathway is expected for SOM faculty (tenure-track basic science and clinician faculty including clinician educators and lecturers, but not research- track faculty) as a requirement to demonstrate competence for their first promotion (note that some faculty need to demonstrate
    [Show full text]
  • Conflict of Interest
    CONFLICT OF INTEREST WHAT IS CONFLICT OF INTEREST? “Any financial or other private interest or undertaking that could directly or indirectly compromise the performance of the public servant’s duties or the reputation of a public servant’s department in its relationship with its stakeholders”1 “A situation in which a public official has a private interest which influences, or appears to influence a public decision.”2 EXAMPLES OF CONFLICTS OF INTEREST IN THE PUBLIC SECTOR . Holding public office as well as private business interests and using your public position to benefit your private interests; . Influencing government tender processes so that your family members and friends are awarded state contracts; . Abusing your position within a government department to ensure your friends and family members are hired into the same department; . Accepting bribes in order to disclose confidential information about the government department that you work for; . Tendering for a municipal contract when you are an employee of the municipality. 1 See definition of conflict of interest in the Public Service Commission Rules on managing conflicts of interest identified through the financial disclosures framework for senior managers 2 Institute for Security Studies (ISS) 2011 Conflict of Interest Toolkit CONFLICTS OF INTEREST IN THE PUBLIC SECTOR – WHAT YOU SHOULD KNOW Important legislation / frameworks Legislation/framework Who in the public sector it applies to Anyone permanently or temporarily Code of Conduct for Public Servants employed in a post established
    [Show full text]
  • Confidentiality in Arbitration: Beyond the Myth Richard C
    University of Missouri School of Law Scholarship Repository Faculty Publications 2006 Confidentiality in Arbitration: Beyond the Myth Richard C. Reuben University of Missouri School of Law, [email protected] Follow this and additional works at: http://scholarship.law.missouri.edu/facpubs Part of the Dispute Resolution and Arbitration Commons, and the Evidence Commons Recommended Citation Richard C. Reuben, Confidentiality in Arbitration: Beyond the Myth, 54 U. Kan. L. Rev. 1255 (2006) This Article is brought to you for free and open access by University of Missouri School of Law Scholarship Repository. It has been accepted for inclusion in Faculty Publications by an authorized administrator of University of Missouri School of Law Scholarship Repository. Confidentiality in Arbitration: Beyond the Myth Richard C. Reuben* I. INTRODUCTION Confidentiality has long been part of the mythology of alternative dispute resolution (ADR). That is to say, one of the apparent virtues of ADR is that its processes have been viewed as confidential. This aspect of the mythology has come under more scrutiny in recent years, particularly in the mediation context.2 This is not surprising considering the popularity of mediation 3 and the centrality of confidentiality to the mediation process. 4 Confidentiality was the primary thrust of the Uniform Mediation Act (UMA), 5 and in their * Richard C. Reuben is an associate professor of law at the University of Missouri-Columbia School of Law. I would like to thank Chris Drahozal, Steve Ware, and the members of the Kansas Law Review for inviting me to participate in this symposium, and all of the symposium participants for their helpful comments.
    [Show full text]
  • Corporate Compliance: Conflict of Interest
    CORPORATE COMPLIANCE: CONFLICT OF INTEREST Conflict of Interest (CC1208) KEY WORDS: Disclosure of Financial Relationships, Conflict of Interest, Human Subjects Research OBJECTIVE/BACKGROUND: Board Members, Officers, and Employees of Mt. Washington Pediatric Hospital (MWPH) have legal duties of care and loyalty to the organization. As a not-for-profit organization, MWPH relies on the public trust to accomplish its mission and objectives. A written conflicts of interest policy promotes transparency of financial interests and demonstrates commitment to managing the organization with integrity and good faith. Increased scrutiny has been directed towards these financial relationships and conflicts of interests in recent years from a variety of sources including the Internal Revenue Service and Congress. Not only do the potential conflicts of interest need to be disclosed within the organization, MWPH needs to manage these interests to protect its not-for-profit status and reputation. A financial interest is, by itself, not necessarily a conflict of interest. However, conflicts of interest can never be completely avoided; therefore, MWPH must take proactive steps to require disclosure and manage the financial interests once identified. The purpose of the conflict of interest policy is to preserve the public trust; to protect the tax-exempt organizations’ interests when a transaction or arrangement is considered that might benefit the private interest of an officer or director of the organization; to avoid possible excess benefit transactions; to promote adherence with fiduciary duties; and to ensure that human subjects research is free from bias resulting from a financial conflict of interest. APPLICABILITY: This policy applies to all Board Members, employees, vendors and agents of any of MWPH.
    [Show full text]
  • Understanding Ethical Reasoning in Design Through the Lens of Reflexive Principlism
    Paper ID #23427 Understanding Ethical Reasoning in Design Through the Lens of Reflexive Principlism Danielle Corple, Purdue University, West Lafayette Danielle Corple is a Ph.D. student in the Brian Lamb School of Communication at Purdue University. She studies organizational communication as well as qualitative and computational research methods. Her specific research interests are gender, organizing, and ethics in online and offline contexts. Mr. David H. Torres, Purdue University, West Lafayette David is a fourth year doctoral candidate in the Brian Lamb School of Communication at Purdue Uni- versity pursuing a PhD in Organizational Communication with a minor in data analysis and research methodology. His research interests reside at the intersection of organizational communication, identity, design, and organizational ethics. Dr. Carla B. Zoltowski, Purdue University, West Lafayette Carla B. Zoltowski is an assistant professor of engineering practice in the Schools of Electrical and Com- puter Engineering and (by courtesy) Engineering Education at Purdue University. She holds a B.S.E.E., M.S.E.E., and Ph.D. in Engineering Education, all from Purdue. Prior to this she was Co-Director of the EPICS Program at Purdue where she was responsible for developing curriculum and assessment tools and overseeing the research efforts within EPICS. Her academic and research interests include the profes- sional formation of engineers, diversity and inclusion in engineering, human-centered design, engineering ethics, leadership, service-learning, and accessibility and assistive-technology. Katharine E. Miller Katharine E. Miller is a second-year doctoral student studying Organizational Communication and Public Relations at Purdue University, with minors in corporate social responsibility and research methods.
    [Show full text]
  • Public Health Principlism Craig M
    Online Journal of Health Ethics Volume 4 | Issue 1 Article 4 Public Health Principlism Craig M. Klugman Ph.D. Department of Health Ecology/MS 274; Nevada Center for Ethics and Health Policy Follow this and additional works at: http://aquila.usm.edu/ojhe Recommended Citation Klugman, C. M. (2007). Public Health Principlism. Online Journal of Health Ethics, 4(1). http://dx.doi.org/10.18785/ojhe.0401.04 This Article is brought to you for free and open access by The Aquila Digital Community. It has been accepted for inclusion in Online Journal of Health Ethics by an authorized administrator of The Aquila Digital Community. For more information, please contact [email protected]. Running head: PUBLIC HEALTH 1 Public Health Principlism Craig M. Klugman, Ph.D. Assistant Professor Department of Health Ecology/MS 274 Nevada Center for Ethics and Health Policy Reno, Nevada 89557-0036 Abstract Public health ethics has grown out of the medical ethics movement and has remained in individualistic biomedical models. However, as public health is a different enterprise than medicine dealing with communities rather than individuals. The author develops public health principlism based on the idea of common citizenship in the community. When the four principles of public health ethics—solidarity, efficacy, integrity, and dignity—are in balance, a state of justice exists. The goal is to have programs that are the least destructive to communities and the least restrictive to people. These principles provide guidance in ethical reasoning when analyzing programs and interventions such as mandatory helmet laws, water fluoridation, and smallpox vaccination to improve the aggregate health of a community.
    [Show full text]
  • Pharmacovigilance in the European Union
    Michael Kaeding Julia Schmälter · Christoph Klika Pharmacovigilance in the European Union Practical Implementation across Member States Pharmacovigilance in the European Union Michael Kaeding · Julia Schmälter Christoph Klika Pharmacovigilance in the European Union Practical Implementation across Member States Prof. Dr. Michael Kaeding Julia Schmälter Christoph Klika Universität Duisburg-Essen Duisburg, Deutschland ISBN 978-3-658-17275-6 ISBN 978-3-658-17276-3 (eBook) DOI 10.1007/978-3-658-17276-3 Library of Congress Control Number: 2017932440 © The Editor(s) (if applicable) and The Author(s) 2017. This book is published open access. Open Access This book is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made. The images or other third party material in this book are included in the book's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the book’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.
    [Show full text]