Did You Sign Away Your DNA?
Millions of people have had their genetic samples collected and analyzed to learn more about who they are. Our DNA reveals ancestral origins, indicates what treatments could be most effective for medical conditions, and helps to predict the health risks each may face. Genetic science has provided amazing insights about the tiny percentage of the human genome that defines our uniqueness. At the same time, the vast similarity of the DNA we all share emphasizes our connectedness to the seven billion plus individuals of humankind.
Some genetic data services have been widely advertised and promoted as a beneficial way to understand ourselves. Access to DNA information for individuals, and how it enriches their life and health, also should be viewed against how third parties may use this extremely personal data. On the one hand, the large amount of genetic data collected could be used by researchers to create important medical breakthroughs. On the other hand, even the genetic information companies recognize the potential that your data could be used against you. DNA test kits include extensive disclosures and disclaimers (which few consumers will ever fully read) spelling out the ways your genetic information could come back to bite you – or possibly a relative. Included among the possible consequences are employment and insurance impacts.
There are laws that protect us from having our genetic information used improperly. The federal Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits health insurers from using genetic data for underwriting; and employers cannot discriminate on the basis of genetic information. However, these protections do not extend to life, disability and long-term care insurance; and GINA does not generally apply to employers with fewer than 15 employees. California law expands on the federal protections to some degree. However, consumers of DNA testing products should consider steps they can take to protect their genetic information from being used or disclosed in unintended ways.
Several months ago, concerns were raised in the media that consumers of certain DNA testing services were signing over “ownership” of their DNA to the companies. These agreements turned out not to go as far as giving “ownership” to the companies, but it is important to understand that consumers are usually granting the companies a license to use the data gleaned from the DNA sample submitted. Before signing an agreement or sending in your sample, be sure you understand what the license allows the company to do, what purposes you can restrict the genetic information to be used for, and whether or not you can later withdraw the license to use your DNA sample or information based on it. However, keep in mind that withdrawing a license in the future probably does not restrict the information from being used if it was previously disclosed for a permitted purpose before you withdrew the license.
DNA information is valuable and you can certainly learn more about your background and possibly glimpse into your future by using it. It may have the potential to save your life or a loved one. So it is worthwhile to ask some pointed questions about how your DNA data is safeguarded and what options you have to restrict the use and disclosure of your genetic information.
About Tim Crawford
Tim Crawford worked at Keenan for more than 20 years and is now consulting for the company on communication, media relations and health care reform projects. Tim is a Certified Internet Marketer, chairs the Internet Marketing Association of New Mexico, and is a member of the California YMCA Board of Directors.