The 21st Century Family Tree – Rising Concerns of Ancestral DNA

In recent years, ancestral DNA kits have become increasingly popular, and with decreasing costs these products have become readily accessible. Although the idea of uncovering genetic makeup is tempting to many, bioethicists have concerns about these products.

The potential risks of obtaining and sharing genetic information are not fully disclosed to consumers.  In a study published in the European Journal of Human Genetics, it was noted that the privacy policies of genetic testing companies are “murky” and fail to sufficiently inform consumers that they could receive “unexpected information.” For example, when an unexpected step-brother was identified through “George Doe’s” genetic testing results, the bombshell to the family resulted in the divorce of his parents. As these tests are accessed by more people, bioethicists foresee more “George Doe” stories.

An even greater concern is privacy. Although the companies generally allow consumers to choose whether or not to share their genetic and personal information in information-sharing databases, there is no guarantee that the information of one individual will not be indirectly identified through a relative’s genetic submission. Without appropriate privacy safeguards in place, there are real concerns that “humanity is on the verge of learning a lot of life-altering information that it can’t unlearn.”

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New Genetic Testing Bill: Potential for Progress or Potential for Discrimination?

According to a recent article published in The Atlantic, the House Committee on Education and the Workforce recently approved H.R. 1313, a bill that would allow employers to pressure their employees to undergo genetic testing and share the results as part of an employer’s “workplace wellness program.” If an employee opts not to share the results, he or she could be forced to pay significantly more for health insurance.

Proponents of the bill note that it simply builds on programs already in place from the Affordable Care Act; however, critics are worried that the bill will take away many of the privacy, discrimination and insurance protections of the Genetic Information Non-Discrimination Act (“GINA”).

From The Atlantic, “The GOP’s New Bill Would Seriously Disrupt Genetics Research”

Excerpt from article:

“‘People are already being discriminated genetically without mandatory genetic testing—that’s what sexism and racism is . . . . This [bill] would result in a higher resolution of discrimination and more individualized ways of targeting people.’ The dark mirror of personalized medicine is personalized discrimination.”

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