05 January 2018

Educating Ourselves and Protecting Our Right to Access DNA Data

A prestigious journal has an interesting article on access by individuals to his or her own genomic data. It may help fight the recent rash of news articles generating fear of DNA testing due to companies using our data for research.

Barbara J. Evans, "HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights," The American Journal of Human Genetics, Volume 102, Issue 1, 5-10; DOI: http://dx.doi.org/10.1016/j.ajhg.2017.12.004.

While the focus is on US laws and organizations, many of the general statements apply worldwide. Articles like this emphasize the importance of educating ourselves about the interpretation and meaning of DNA markers and our genes. We need to fight the perception that most of us will "make bad decisions that harm both [ourselves] and society" if we have access to our DNA data.

DNA education through teaching and writing has been my main focus in recent years. So many social media users seem to use posts as their main learning tool nowadays. It would be great if those answering questions included pointers to reputable resources where the person can learn more. Education is key to eliminating the perception that we are all dummies when it comes to DNA. Links to genetic genealogy articles and educational opportunities can be found here on my DNA bibliography which is updated as I learn of new resources.

Some key statements from the Evans article:
Although there are a range of bioethical perspectives on this question, there is a fairly broad consensus within the bioethics community that laypeople can be harmed by access to subclinical-quality genomic data.
A large cast of third parties potentially has access to your whole genome, while ethicists debate whether it is “information” you should have.
Like the right to vote, access to one’s own genomic data is a foundational civil right that empowers people to protect all their other civil rights, and HIPAA displaced states’ power to interfere with it.

All statements made in this blog are the opinion of the post author. This blog is not sponsored by any entity other than Debbie Parker Wayne nor is it supported through free or reduced price access to items discussed unless so indicated in the blog post. Hot links to other sites are provided as a courtesy to the reader and are not an endorsement of the other entities except as clearly stated in the narrative.

To cite this blog post: Debbie Parker Wayne, "Educating Ourselves and Protecting Our Right to Access DNA Data," Deb's Delvings, 4 January 2018 (http://debsdelvings.blogspot.com/ : accessed [date]).

© 2018, Debbie Parker Wayne, Certified Genealogist®, All Rights Reserved

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