Health Scan: Children's genetic privacy must be protected

Health Scan Childrens

By
October 31, 2009 23:32
3 minute read.

Children need more privacy regarding their genetic material, according to a Tel Aviv University researcher. Scientists look for clues about therapies and cures for life-threatening childhood illnesses in children's DNA, but the decision as to who should have access to DNA samples raises an ethical conundrum, wrote Dr. David Gurwitz, director of the National Laboratory for the Genetics of Israeli Populations in TAU's department of human molecular genetics and biochemistry in a recent article in Science, along with colleagues from Holland and Canada. They noted that we cannot be aware today of future implications of widely distributing personal genetic information. In the wrong hands, it could lead to unforeseen privacy risks. And since children cannot give consent to research their DNA, the scientists urge population biobanks (including the US National Institutes of Health's planned National Children's Study) not to distribute DNA samples from children to outside researchers before certain checks are in place. In-house research can be performed at the biobanks and the data published with sufficient protections so that pediatric research is not seriously impaired, they argue. Additional measures could include encoding the critical data - sets of polymorphic genetic sequences. The recommendations are not written in stone, said Gurwitz, but it's important that decisionmakers weigh a number of factors. "When the societal benefits appear to outweigh the privacy risks, such as with DNA samples from disease-specific biobanks or tissues from children with pediatric diseases - we suggest that the non-consented children's DNA could be distributed in the same manner as before. There are many new initiatives for children's biobanks taking place all around the world now, yet we feel that not enough attention is being paid to addressing what could be serious concerns for the future privacy of participating children," he added. "We can expect that the today's younger generation will live a long and healthy life as active members of society, and we need to protect their future privacy," he continued. "What if a child whose parents donate her DNA today to a population biobank becomes a future candidate in a national election campaign, and an opponent comes up with tell-tale hints to health risks?" Fifty years from now, such data could be used to discriminate against people who want to take a mortgage, attend a private school or immigrate to a new country, Gurwitz adds. The biobank he safeguards contains several thousand DNA samples taken from consenting adult Israelis. Representing diverse ethnic populations of Jews and Arabs, it includes samples from people whose ancestral communities were isolated from each other. These DNA samples have been used in scores of research projects on genetic contributions to cancer and other diseases, as well as on the history of the Jewish people. BOTOX FOR NASAL CONGESTION Injected botulinum toxin (Botox) is well known for temporarily smoothing wrinkles, as well treating a variety of medical problems such as tics and excessive sweating. But a new article in BioMed Central's Head & Face Medicine claims Botox can treat intrinsic rhinitis. Ear-nose-and-throat specialist Dr. Rainer Laskawi of the University Medical Center at Göttingen in Germany says sponges soaked in Botox are as effective in treating the condition as conventional means. Millions of people around the world suffer from nonallergic rhinitis - a syndrome characterized by a lot of mucous, and which may affect as much as a quarter of the population. It can impair sleep and cause excessive daytime sleepiness, concentration problems and increased irritability "Intrinsic rhinitis affects a lot of patients and can be quite disabling," he wrote. "Botox injections can help, and we wanted to explore a less-invasive alternative." For half an hour, the researchers inserted sponges into the patients' nostrils which were soaked with Botox. The patients then kept a "nose diary" for the next three months, detailing sneezes per day, tissues used and a "congestion score." A group of patients who received the treatment scored better on all aspects. According to Laskawi, "We've shown that the minimally invasive application is a safe, painless method that can lead to a long-lasting reduction in nasal hypersecretion."


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