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Community Community Pakistani Boyan Slat, entrepreneur a Dutch P7Noreen Alaas P16 student, has believes that Qatar off ers designed a floating device a friendly and conducive to catch plastic debris in atmosphere for businesses ‘garbage patches’ formed to grow. by ocean currents. Friday, December 29, 2017 Rabia II 11, 1439 AH DOHA 15°C—24°C TODAY PUZZLES 12 & 13 LIFESTYLE/HOROSCOPE 14 TToughough ccallall COVER STORY Testing for Alzheimer’s genes forces diff icult decisions. P2-3 2 GULF TIMES Friday, December 29, 2017 COMMUNITY COVER STORY Sense of foreboding The FDA has allowed 23andMe, which has more than 3 million customers, to release information about genes PRAYER TIME that increase their risk for 10 diseases, including two Fajr 4.57am Shorooq (sunrise) 6.18am particularly scary ones: Alzheimer’s and Parkinson’s Zuhr (noon) 11.36am Asr (afternoon) 2.33pm Maghreb (sunset) 4.55pm disease, writes Stacey Burling Isha (night) 6.25pm USEFUL NUMBERS Emergency 999 Worldwide Emergency Number 112 Kahramaa – Electricity and Water 991 Local Directory 180 International Calls Enquires 150 Hamad International Airport 40106666 Labor Department 44508111, 44406537 Mowasalat Taxi 44588888 Qatar Airways 44496000 Hamad Medical Corporation 44392222, 44393333 Qatar General Electricity and Water Corporation 44845555, 44845464 Primary Health Care Corporation 44593333 44593363 Qatar Assistive Technology Centre 44594050 Qatar News Agency 44450205 44450333 Q-Post – General Postal Corporation 44464444 Humanitarian Services Offi ce (Single window facility for the repatriation of bodies) ast year, Barbara’s husband For several years, customers got the potential to encourage participation Ministry of Interior 40253371, 40253372, thought it would be fun to ancestry information and reports about in clinical trials that scientists hope will 40253369 learn more about their family’s relatively benign genetic traits such as lead to discoveries that will prevent or Ministry of Health 40253370, 40253364 history, so he bought 23andMe whether they have dry or wet earwax. treat Alzheimer’s and other diseases. Hamad Medical Corporation 40253368, 40253365 gene-testing kits for himself, The company returned to telling people More than 85 percent of 23andMe Qatar Airways 40253374 LBarbara and their three daughters for whether they were carriers for diseases customers say they would like to be part Christmas. like sickle cell anaemia in 2015. This of research. The company makes its Once she understood it, she realised year, the FDA allowed 23andMe, which anonymised data available to academic the information in that report was has more than 3 million customers, and drug-company investigators, often devastating. She has a much higher to release information about genes for a fee, and it sometimes notifi es risk than most people of developing that increase their risk for 10 diseases, customers about trials they can join, te Unqu Alzheimer’s disease, a form of dementia including two particularly scary ones: including two that are seeking people uo ot with no cure and no good treatment. Alzheimer’s and Parkinson’s disease. with the gene variant Barbara has, Q e That’s bad news for the whole family. New customers can choose whether APOE4. The news also gives people time He is richest Her husband, who does not have the they want only the ancestry reports to make lifestyle changes that may lower who is content with the mutation, may have to take care of or are willing to pay more ($199) for their risk. And, many people really want her. Her daughters will have lower risk ancestry and health-risk reports. this information. least, for content is the than she does because of her husband’s Customers who bought the service in Joyce Tung, vice president of research genes, but they have inherited one copy previous years can now choose to see for 23andMe, said the company’s wealth of nature. of a gene that raises their risk too. reports that weren’t part of the package information not only satisfi es While she is now “at peace” with the when they signed up. customers’ curiosity, but also has the — Socrates results, Barbara says she probably would Even new customers who purchase potential to help “prevent, understand not look at them if she had the choice the health reports may be blindsided by and treat disease.” today. “I wish I had known the can of unexpected information, experts said. But many physicians think it would worms I was opening,” she said. The A They might, for example, be worried be better for people to get bad genetic 67-year-old resident of a Philadelphia about their family history of the eye news from experts who can answer suburb spoke on the condition of disease macular degeneration — there’s their questions immediately. Some are anonymity because of the “stigma” of a report on that too — only to fi nd out concerned that ill-prepared customers Community Editor Alzheimer’s. “I’m just not ready,” she said. they’re at high risk for something more may wish that they had left Pandora’s 23andMe launched its “personal serious that wasn’t on their radar. box alone. Every time Barbara forgets Kamran Rehmat genome service,” which included And particularly savvy consumers can why she walked into a room — a e-mail: [email protected] health-risk data, in 2007. It stopped download their raw data and plug it into common experience for people her age Telephone: 44466405 revealing health risks under orders from websites that will tell them more than — she wonders: “Oh my gosh, is this it? Fax: 44350474 the US Food and Drug Administration 23andMe does, another potential source Is it Alzheimer’s?” in 2013, because it had not received of worry. Consumers may also have to consider authorisation. On the plus side, the information has new ethical dilemmas. The Genetic Friday, December 29, 2017 GULF TIMES 3 COVER STORY COMMUNITY Information Nondiscrimination Act She said there’s less room for of 2008 protects people with high- misunderstanding when patients risk genes from discrimination get the bad news in person. “I still on the job or when buying health believe that learning your APOE insurance, but it does not apply to test results should be done in life, disability or long-term care conversation with a medical health insurance. Companies like 23andMe provider, like a genetic counsellor,” say their information is secure and she said. well-protected from hackers, but That’s what happens with the customers may face a quandary if Generation Program, two studies an insurer asks about risk. Banner is overseeing that are Everyone has two copies of the recruiting people with APOE4 APOE (Apolipoprotein E) gene, genes for clinical trials. which is involved in the transport Langbaum had hoped that the of fats. It comes in three varieties. new 23andMe testing would at least APOE2, the rarest, protects against lead a lot more people to join the Alzheimer’s. Most people have trials. That hasn’t happened. APOE3, which does not aff ect There are, of course, people who Alzheimer’s risk. But APOE4 want the whole truth. A 77-year- is the most common genetic old Philadelphia man, who spoke factor associated with late-onset on the condition of anonymity, Alzheimer’s disease. Not everyone found out through 23andMe that he who has it gets Alzheimer’s and not has two APOE4 genes and went for everyone who has Alzheimer’s has testing. So far, his results are good. this gene. However, 23andMe tells His mother died of Alzheimer’s customers that 40 to 60 percent of and his older sister is in the end people with Alzheimer’s have one stages now. He didn’t care about his or two copies of APOE4. Doctors ancestry. He took the 23andMe test say that patients with two copies because he wanted to know about tend to get the disease earlier than Alzheimer’s. “To me, knowledge is others and that their lifetime risk is power,” he said. “If somebody tells much higher. About a quarter of the me that, in a year, my mind’s going population has at least one copy of to be wiped out, at least I can have a the APOE4 type, with 2 to 3 percent pretty good year.” having two. Julie Gregory signed up According to 23andMe’s for 23andMe in its early days disclosure information, a woman’s hoping for information about an chance of having Alzheimer’s at age immunological syndrome but 85 is 6 to 10 percent if she has no was instead “devastated” to learn APOE4 variant, 27 to 30 percent if that she is APOE4 positive. She is she has one and 60 percent if she now grateful for the information has two. The risk is lower for men: and is trying to prevent dementia 5 to 8 percent with normal genes, small numbers of patients have Weisman’s patients, who did not FDA to urge it to change its “terrible with a healthy lifestyle and anti- 20 to 23 percent with one copy of come to them because they were have Alzheimer’s but tested positive decision.” infl ammatory diet. She started APOE4 and 51 percent with two concerned and confused about for APOE4, was already taking “This is a travesty,” he said in an ApoE4.info, an online support copies. 23andMe test results. The company Aricept, a dementia drug, when interview. “The FDA has allowed group for people who have the Three Philadelphia-area doctors asks customers to read information she came to him. (A doctor who this private company to release APOE4 variant. It has 2,000 who specialise in treating dementia about Alzheimer’s genes before specialises in Parkinson’s patients information and potentially drop members, most of whom are — Jason Karlawish, co-director of they click on their results, but the at Penn said she has not seen bombshells into a family with really 23andMe customers, she said, and the Penn Memory Center; Carol doctors said some patients still patients who learned they have the no control … or professionalism.” is growing “by leaps and bounds” Lippa, director of the Cognitive misunderstand whether the results much rarer Parkinson’s-risk genes.) Jessica Langbaum, principal this year.

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