DNA Testing

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DNA testing, otherwise referred to as genetic testing[1], is the acquisition and analysis of DNA for academic, clinical and commercial purposes. Uses vary in that testing may be employed to: (1) predict or diagnose genetic disease and drug responses in humans, (2) identify predispositions toward specific behaviors, (3) selectively breed plants and animals to develop particular characteristics, and (4) determine ancestry or paternity - among others.

DNA can be acquired via hair, skin, amniotic fluid, blood, and cheek swab samples; however, test recipients must first provide informed consent[2]. Medical practitioners (i.e., doctors, genetic counselors, technicians) utilize DNA sequencing to identify specific mutations or abnormalities in an individual’s chromosomes, proteins or genes. Ethical implications include the insecurity or selling of DNA data to third parties without the DNA’s “owner” knowledge, as well as the potential abuse, misuse or misinterpretation of DNA data.

Commercial Use (Direct-To-Consumer)

Genetic genealogy and/or personal genomic[3] companies - like Ancestry and 23andMe - have recently become popularized. These privately held companies provide consumers with access to DNA testing, so that consumers are no longer required to ask a healthcare professional to order the test for them, should they so desire. Direct-to-consumer (DTC) DNA testing may encourage individuals to be more proactive with respect to their health and well-being, and is often less expensive than the alternative - genetic testing through a healthcare professional. However, DTC genetic testing is not considered to be diagnostic, in that “it cannot be used to diagnose any disease or condition”[4]. Therefore, consumers run the risk of making “important decisions about disease treatment or prevention based on inaccurate, incomplete or misunderstood information from their results”[5].

Moreover, consumers likely do not fully understand the privacy policies of these private DTC genetic testing companies. This may be an issue, seeing as there are numerous risks to handing over your genetic information. It is important that consumers question how their genetic information is treated by DTC companies (i.e., safe handling of DNA samples, secure data storage). When choosing a company, consumers should also consider the extent to which their genetic information is protected from: changes to privacy policies, the demise of the business, malicious actors (hackers), and/or the selling to third parties. Law enforcement has even been known to pressure companies into sharing genetic information with warrants and court orders[6].

A Call for Oversight

Genetic Information Nondiscrimination Act

Ethical Implications

A Question of Ownership

Misuse of Genetic Information

References

  1. https://en.wikipedia.org/wiki/Genetic_testing
  2. https://en.wikipedia.org/wiki/Informed_consent
  3. https://en.wikipedia.org/wiki/Personal_genomics
  4. https://ghr.nlm.nih.gov/primer/dtcgenetictesting/dtccost
  5. https://ghr.nlm.nih.gov/primer/dtcgenetictesting/dtcrisksbenefits
  6. https://ghr.nlm.nih.gov/primer/dtcgenetictesting/dtcprivacy