Bioethics panel urges more gene privacy protection
In this image provided by the National Human Genome Research Institute, a NHGRI researcher monitors a DNA sequencing machine at the NIH in Bethesda, Md. A presidential commission says new protections to ensure the privacy of people's genetic information are critical if the nation is to realize the enormous medical potential of gene-mapping. (AP Photo/National Human Genome Research Institute, Maggie Bartlett)
It sounds like a scene from a TV show: Someone sends a discarded coffee cup to a laboratory where the unwitting drinker's DNA is decoded, predicting what diseases lurk in his or her future.
A presidential commission found that's legally possible in about half the states - and says new protections to ensure the privacy of people's genetic information are critical if the nation is to realize the enormous medical potential of gene-mapping.
Such whole genome sequencing costs too much now for that extreme coffee-cup scenario to be likely. But the report being released Thursday says the price is dropping so rapidly that the technology could become common in doctors' offices very soon - and there are lots of ethical issues surrounding how, when and with whom the results may be shared.
Without public trust, people may not be as willing to allow scientists to study their genetic information, key to learning to better fight disease, the report warns.
"If this issue is left unaddressed, we could all feel the effects," said Dr. Amy Gutmann, who chairs the Presidential Commission for the Study of Bioethical Issues.
Mapping entire genomes now is done primarily for research, as scientists piece together which genetic mutations play a role in various diseases. It's different than getting a lab test to see if you carry, say, a single gene known to cause breast cancer.
Gutmann said her commission investigated ahead of an anticipated boom in genome sequencing as the price drops from thousands today to about $1,000, cheaper than running a few individual gene tests.
The sheer amount of information in a whole genome increases the privacy concerns. For example, people may have their genomes sequenced to study one disease that runs in the family, only to learn they're also at risk for something else - with implications for relatives who may not have wanted to know.
Thursday's report shows a patchwork of protection. A 2008 federal law prohibits employers or health insurers from discriminating on the basis of genetic information, so that people don't put off a potentially important gene test for fear of losing their job or health coverage. But that law doesn't prevent denial of life insurance or long-term care insurance. Plus, there's little oversight of how securely genetic information is stored electronically, the report found.
Then there's the question of surreptitiously ordering genome screening from a private lab, such as during a nasty custody battle. The report didn't say that's ever happened, just that it could, and found no overarching federal or industry guidelines on how commercial testing companies should operate.
"It is not a fantasy to think about how, in the future, without clear baseline privacy protections people could use this in ways that are really detrimental," Gutmann said.
Among the commission's recommendations:
-Governments should prohibit genome sequencing without the consent of the person from whom the sample came, as part of a minimum, consistent privacy standard for every state.
-Health authorities should establish clear policies defining, in research and clinical settings, who can access someone's genomic data, allowing individuals to share it as they see fit while guarding against misuse.
-Consent forms for people enrolling in research studies should make clear how their data might be used now and in the future. Also, researchers should make clear if participants will be told about all the known disease risks spotted in their genome, including those not being expressly studied.
The Department of Health and Human Services, which oversees genetic research, called privacy an important issue and said officials looked forward to evaluating the recommendations.
Copyright 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
- Researchers urge ethics guidelines for human-genome research Mar 26, 2008 | not rated yet | 0
- OMG - Guess what my genes say? Researcher discusses ethics of posting genetic info online Feb 23, 2010 | not rated yet | 0
- Prenatal whole genome sequencing: Just because we can, should we? Aug 10, 2012 | not rated yet | 0
- Safeguards against misuse of genetic data urged May 29, 2012 | not rated yet | 0
- Toward the ethical treatment of whole genome research participants Mar 25, 2008 | not rated yet | 0
- Separate lives: Neuronal and organismal lifespans decoupled Mar 27, 2013 | 4.9 / 5 (8) | 0
- Sizing things up: The evolutionary neurobiology of scale invariance Feb 28, 2013 | 4.8 / 5 (10) | 14
Classical and Quantum Mechanics via Lie algebras
Apr 15, 2011 I'd like to open a discussion thread for version 2 of the draft of my book ''Classical and Quantum Mechanics via Lie algebras'', available online at http://lanl.arxiv.org/abs/0810.1019 , and for the...
- More from Physics Forums - Independent Research
More news stories
Genetics 21 hours ago | 3 / 5 (2) | 0 |
Can human genes be patented? That was the question posed by Alan J. Snyder, vice president and associate provost for research and graduate studies at Lehigh, and Lee Kaplan, scientific director of cellular and molecular genetics ...
Genetics May 24, 2013 | 4 / 5 (1) | 0
Researchers from Queen Mary, University of London have led the largest sequencing study of human disease to date, investigating the genetic basis of six autoimmune diseases.
Genetics May 22, 2013 | 4.5 / 5 (4) | 0 |
University of Minnesota Medical School researchers from the Masonic Cancer Center, University of Minnesota, in partnership with the University's Brain Tumor Program, have developed a new mouse model of malignant peripheral ...
Genetics May 20, 2013 | 5 / 5 (1) | 0 |
Northwestern University scientists have shown a gene involved in neurodegenerative disease also plays a critical role in the proper function of the circadian clock.
Genetics May 16, 2013 | 3 / 5 (1) | 1 |
4 hours ago | 5 / 5 (1) | 4
23 hours ago | 3.7 / 5 (3) | 4 |
4 hours ago | not rated yet | 1
May 24, 2013 | 5 / 5 (5) | 0 |
4 hours ago | not rated yet | 0
Mortality and length of stay are highest in heart failure patients admitted in January, on Friday, and overnight, according to research presented today at the Heart Failure Congress 2013. The analysis of nearly 1 million ...
4 hours ago | not rated yet | 0