HIPPA & Privacy | Genetic Privacy Network
Downstream, such legislation could also stifle medical progress. Today, genetic tests are available for more than 10,000 health conditions, and whole-genome sequencing may eventually become the standard of care and part of our medical records. DNA analysis is increasingly included in biomedical research protocols. If employers and business associates of wellness programs can request and share genetic information, and impose penalties for nondisclosure, surely that will dampen enthusiasm about participating in research.
Threats to Your Genetic Privacy | Health | US News
H.R. 1313 undermines the principle that genetic information needs the highest level of protection so that people can make decisions about obtaining their own information without fearing that it might be used against them. It thus challenges individual autonomy, a bedrock ethical principle in medicine and research. In the genetics context, this principle requires that people be provided adequate information about what a genetic test is and what the result may mean for them and their families so they can make an informed decision about being tested. Autonomy encompasses the “right not to know” one’s genetic information, which is particularly important with tests that reveal future health risks when no prevention or intervention is available to reduce those risks. This bill would permit employers to use financial incentives to get employees to take a genetic test that might not be medically necessary or ethically appropriate. It would also challenge employees’ ability to guard their privacy, overriding the requirement that individually identifiable genetic information gathered by wellness programs be shared only with the patient and the clinician providing care.
H.R. 1313 takes a different approach, however. It would deem workplace wellness programs that comply with ACA standards — including the absence of standards for practices the law doesn’t address — to be compliant with ADA and GINA standards. As a result, most participatory wellness programs that collect health information would face no limit on incentives for getting people to divulge information. GINA wellness-program standards would no longer protect genetic information. Employers could pressure employees to disclose information, and wellness programs could share identifiable information with employers.
DNA Testing, Banking, and Genetic Privacy | NEJM
Without adequate protections for genetic privacy, autonomy to discover and use one's own genetic information for one's own purposes cannot be realized. A fundamental concern is that the possession and storage of a personally identifiable DNA sample give the possessor access to a wealth of information about the person and his or her genetic relatives. This includes information derivable from new DNA tests that were not available, or even anticipated, when the sample was relinquished. Consequently, as long as personally identifiable DNA samples are stored, there is the possibility of unauthorized access to and use of genetic information — an invasion of genetic privacy. To the extent that we see ourselves and our future as influenced by our genes, such invasions can disrupt our very sense of self.
Can We—and Should We—Ensure Genetic Privacy
Recent years have seen the emergence of private companies, such as the Ardais Corporation and DNA Sciences, that — either at hospitals or through appeals over the Internet — collect and analyze samples and personal information for the express purpose of selling them to researchers. The National Institutes of Health also has plans to develop a national repository similar to the U.K. Biobank, a new resource for researchers that will eventually include information and blood samples from 500,000 volunteers. With such developments, DNA banking is quickly changing from an academic research activity to a governmental and commercial enterprise conducted by DNA brokers. As a result, the relationship between subjects and researchers is being severed, and along with it the associated legal rights and obligations, including obligations to reduce risks to subjects' privacy and to maintain the confidentiality of their information. The unresolved legal status of the relationships among donors, brokers, and researchers raises troubling questions about privacy and property rights.
Genetic Information Privacy | Electronic Frontier Foundation
In response to this concern, a majority of states have begun to regulate genetic testing and fair uses of genetic information. But these laws are almost exclusively antidiscrimination statutes that target the behavior of insurers, employers, or both after the DNA has been collected and analyzed. Some states, such as New Jersey, include broader privacy protections by prohibiting unconsented-to collection and testing of DNA generally (although those statutes typically include broad exceptions for law enforcement and medical research) and by defining requirements for consent to testing. Only about half a dozen states, however, require either explicit consent for sample storage or the destruction of samples after the purpose for their collection has been achieved.