Difference between revisions of "DNA Testing"

Revision as of 01:28, 15 March 2019

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 consumer's 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. According to Newstex Global Business Blogs, “In July, 23andMe announced a partnership with GlaxoSmithKline through which the pharmaceutical company will use home DNA results from 23andMe's 5 million customers for new drug research.”^[6] These customers may not have realized that by sending a DNA sample to a 23andMe, they allowed the company to profit off of their genetic information. Law enforcement has even been known to pressure companies into sharing genetic information with warrants and court orders ^[7].

The Need for Oversight

There are many critics who believe that government regulation and oversight of private DTC genetic testing companies is lacking. The Genetic Information Nondiscrimination Act, or GINA, is the only existing law that addresses this concept of genetic privacy. There are concerns among privacy experts regarding GINA’s narrow scope - which is limited to prohibiting health insurance companies and employers from exploiting an individual’s genetic information. As a result, health insurance companies are not able to deny coverage based on an individual’s genetic information - and employers similarly cannot consider the genetic information of an individual when making decisions (i.e., firing, hiring, promotion) ^[8]. Yet, this policy vacuum may help prompt the abuse of genetic privacy by a variety of actors. Without sufficient regulation, we may find ourselves under “genetic surveillance”^[9]. As described earlier, law enforcement (and governmental organizations) have conducted searches of DTC databases of genetic information - without the consumer’s knowledge or consent.

Additionally, the exploitation of an individual’s genetic information can be attributed to the absence of a definition of its legal “owner”. Should this be resolved, and the consumer (the individual who provides the DNA sample) is determined as the legal owner of his or her own genetic information, DTC genetic testing companies would likely have a more difficult time abusing or exploiting the information.

Ethical Implications

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. ↑ 3BL blogs: DNA testing is popular, but many are unaware of privacy concerns (2019). Chatham: Newstex. Retrieved from http://proxy.lib.umich.edu/login?url=https://search-proquest-com.proxy.lib.umich.edu/docview/2172287749?accountid=14667
7. ↑ https://www.washingtonpost.com/news/true-crime/wp/2018/04/27/golden-state-killer-dna-website-gedmatch-was-used-to-identify-joseph-deangelo-as-suspect-police-say/?noredirect=on&utm_term=.8925eff45079
8. ↑ https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act
9. ↑ https://www.wired.com/story/genome-hackers-show-no-ones-dna-is-anonymous-anymore/