Do I own my genetic code?

Do I own my genetic code?

Although sharing one's own data is voluntary, there are no protocols in place to protect relatives' genetic privacy. When a person chooses to make their own data public, they implicitly make data about their relatives public as well, because related persons share sections of their genetic code.

The question of whether an individual owns their DNA was addressed by the United States Supreme Court in 23andMe v. Nancy and Michael Rutter. The court held that because DNA contains personal information about an individual's health and ancestry, it is protected by the Fourteenth Amendment's guarantee of due process. However many legal experts believe that this decision may be limited to the particular type of testing performed by 23andMe at the time the case came before the court. Other genealogy companies such as collect much more information about their users than 23andMe did at the time of the ruling. They use this information to help users connect with relatives, find long-lost ancestors, and learn about their genetic background. Some experts have argued that since these companies do not contact their customers except to fulfill requests, there is no need for them to honor opt-outs or remove profiles from their databases. Others say that since the company knows who you are and what you want from your profile, you should be able to cancel orders without penalty.

In conclusion, yes, you own your genetic code but only if you choose to share it.

Do we own our genetic information?

They certainly can. All of them contain language in their rules that allows them to share or sell our genetic information, but only if you consent. "Any sharing of genetic information for external research purposes is controlled by informed permission," according to the AncestryDNA Terms and Conditions. "Upon request, Ancestry will not provide any customer's genetic information to any third party."

Ancestry's privacy policy also states: "Ancestry may disclose your personal information if required to do so by law, or in good faith belief that such action is necessary to comply with a legal obligation, protect ours or others' rights or prevent fraud or other crimes.

Ancestry's use of your genetic information is explained on its website under the label "Ancestry Uses Your DNA". There you can read that your results may be included in a database that helps scientists better understand disease risks and develop treatments. Your DNA may also be used by advertisers to target advertisements at specific demographics. No personally identifiable information is needed to do this sort of analysis with DNA data.

Your genetic information is also shared with health care providers who have been given authorization to access your DNA test results. These parties may use your results alone or in combination with other individuals' results to help diagnose medical conditions, find links between different diseases, and develop treatments.

Do we have an obligation to protect genetic information?

GINA (the Genetic Information Nondiscrimination Act of 2008) and, more subsequently, HIPAA are federal statutes that deal with genetic information. GINA is primarily an anti-discrimination statute with little regard for privacy. It prohibits employers from discriminating against employees or job applicants because of a genetic predisposition to any disease or condition. HIPAA is much broader in scope and applies to the health care industry generally. It regulates the use and disclosure of personal medical information, which it defines as information about your medical history, including prior illnesses or conditions. The act also requires that individuals be notified of their rights with respect to their medical records and allows them to limit or prohibit certain types of disclosures.

In addition to these laws, there is also a general ethical obligation not to discriminate based on genetic information. This obligation exists regardless of whether the discrimination is based on potential risks associated with a person's genotype or on the actual presence of a genetic trait. For example, it is widely accepted that it is unethical to deny employment opportunities to someone because they carry a gene for albinism.

Genetic discrimination can occur in several contexts. One type of situation involves an employer who searches for specific genes related to diseases or conditions and excludes people with such genes from employment or other benefits.

About Article Author

Steven Weatherly

Steven Weatherly is a man that has seen the worst of humanity. He’s witnessed some of the most horrific events one can imagine, and he's done it all while maintaining his sanity. He knows about emergency situations, safety precautions, and how to maintain privacy from high-tech devices. Steven understands what it means to be in danger, but he also realizes when it’s time to walk away from bad situations. This knowledge comes from having spent decades working in a field that many would consider dangerous or risky.

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