Navigation Links
Keeping DNA 'all in the family'
Date:10/6/2009

Scientists look for clues about therapies and cures for life-threatening childhood illnesses in children's DNA -- it seems only logical to do so. But the decision as to who should have access to DNA samples from children provides a unique ethical conundrum, says a Tel Aviv University researcher in a recent publication for the esteemed journal Science, co-authored by colleagues from The Netherlands and Canada. The recommendations, which call for new policies on access to biobanked children's DNA, could shape America's legislation on the issue in the coming years.

With his co-authors, Dr. David Gurwitz, director of the National Laboratory for the Genetics of Israeli Populations (NLGIP) in the Department of Human Molecular Genetics and Biochemistry at TAU, explains 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 on their DNA, they argue, population biobanks (including the National Children's Study planned at the U.S. National Institutes of Health) should not distribute DNA samples from children to outside researchers not before certain fail-safe checks are in place.

In-house research can be performed at the biobanks, they suggest, and the data published with sufficient protections, so that pediatric research is not seriously impaired or delayed. This approach gives maximal protections against the misuse of individual genetic data from non-consenting children, they write in Science. Additional measures could include encoding the critical data sets of polymorphic genetic sequences an argument presented recently and one which Dr. Gurwitz agrees could be among the measures for protecting the privacy of DNA donors.

Weighing society against privacy

The recommendations are not written-in-stone, Dr. Gurwitz warns, but it's important that decision makers weigh in 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 paediatric diseases we suggest that the non-consented children's DNA could be distributed in the same manner as before to outside researchers, while taking appropriate safeguards," says Dr. Gurwitz.

"There are many new initiatives for children's biobanks taking place all around the world now, from the U.S. to China, 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 adds.

Avoiding future genetic discrimination

"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," Dr. Gurwitz reasons. "What if a child whose parents donate her DNA today to a population biobank becomes a future candidate of a future national election campaign, and an opponent comes up with tell-tale hints to health risks carried in her DNA sequence?" 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, Dr. Gurwitz adds.

Dr. Gurwitz spoke at an European Science Foundation Biobanks meeting last year, where he first suggested new guidelines for access by researchers to DNA collected from children. While research on children's DNA pushes full-steam ahead, Dr. Dr. Gurwitz and his colleagues want researchers to start openly discussing the ethics concerning biobanked children's DNA.

Through his work at TAU's unique NLGIP biobank, Dr. Gurwitz has seen firsthand how complex the issues of protecting the genetic details of individuals can be. The biobank he safeguards contains several thousand DNA samples, taken from consenting adult and healthy Israeli individuals. Representing diverse and unique ethnic populations of Israeli Jews and Arabs, the biobank includes people whose ancestral communities were isolated from each other in the Jewish Diaspora -- from India and Yemen to Iran, Georgia, Ethiopia, and Poland. The DNA samples of these donors have been constructive for scores of research projects on genetic contributions to cancer and other diseases, as well as on the history of the Jewish people. For example, studies have shown genetic relatedness of Jews from all over the Diaspora.

Studying these unique populations, and some of the unusual genetic diseases and traits carried through them, can be like a glimpse back in time, says Dr. Gurwitz. Such research also helps him visualize the future of medicine one where diseases will be managed with personalized medicine allowing individually-tailored, safer and more effective therapies, based on personal genetic information, but without compromising the privacy of the individual.


'/>"/>

Contact: George Hunka
ghunka@aftau.org
212-742-9070
American Friends of Tel Aviv University
Source:Eurekalert  

Related biology news :

1. New keys to keeping a diverse planet
2. Case Western Reserve University study looks at keeping migrant workers children healthy
3. Keeping an eye on the surroundings
4. A second career for a growth factor receptor: keeping nerve axons on target
5. Keeping chromosomes from cuddling up
6. Wistar scientists find key to keeping killer T cells in prime shape for fighting infection, cancer
7. Researchers unzip molecules to measure interactions keeping DNA packed in cells
8. Keeping golf courses green when fresh water is limited
9. Study on keeping nuclear bombs from US ports shows misplaced fear over cargo scanning cost
10. Study: Young Arctic muskoxen better at keeping warm than scientists thought
11. Family conditions may affect when girls experience puberty
Post Your Comments:
*Name:
*Comment:
*Email:
Related Image:
Keeping DNA 'all in the family'
(Date:2/3/2016)... -- --> --> Fourth quarter 2015: ... 1,187% compared with fourth quarter of 2014. Gross margin was ... 30.0). Earnings per share increased to SEK 6.39 (loss: 0.49). ... 74.7). , --> --> ... M (233.6), up 1,142% compared with 2014. Gross margin was ...
(Date:2/3/2016)... 2016 http://www.researchandmarkets.com/research/d8zjcd/emotion_detection ... "Emotion Detection and Recognition Market by ... Software Tools (Facial Expression, Voice Recognition and ... - Global forecast to 2020" report ... http://www.researchandmarkets.com/research/d8zjcd/emotion_detection ) has announced the addition of ...
(Date:2/2/2016)... Feb. 2, 2016 Checkpoint Inhibitors for ... Market Are you interested in the future ... for checkpoint inhibitors. Visiongain,s report gives those predictions ... and national level. Avoid falling behind in ... opportunities and revenues those emerging cancer therapies can ...
Breaking Biology News(10 mins):
(Date:2/10/2016)... , Feb. 10, 2016  Matchbook, Inc., a ... fast growing biotech companies, announced today the appointment ... Strategic Advisor. Jim brings nearly 25 years of ... procurement, having spent nearly two decades in executive ... and Procurement at Genzyme and, most recently headed ...
(Date:2/10/2016)... ... 10, 2016 , ... HOLLOWAY AMERICA, a leading custom stainless ... Mountain Chapter 21st Annual Vendor Exhibition on Thursday, February 18, 2016. The Rocky ... its annual event, which will run from 3:00 p.m. - 8:30 p.m. at ...
(Date:2/10/2016)... (PRWEB) , ... February 10, 2016 , ... ... expansion to their comprehensive training and support program, Sonalink™ remote monitoring. The inaugural ... procedures performed on Friday, February 5th, connecting Dr. Samuel Peretsman to a HIFU ...
(Date:2/10/2016)... ... February 10, 2016 , ... Curoverse announced ... On Azure, Arvados provides capabilities for managing and processing genomic and health data ... from major institutions collecting and analyzing genomic data,” said Adam Berrey chief executive ...
Breaking Biology Technology: