Could DTC Genome Testing Exacerbate Research Inequities?
By Christine Aicardi, Maria Damjanovicova, Lorenzo Del Savio, Federica Lucivero, Maru Mormina, Maartje Niezen & Barbara Prainsack,
The Hastings Center Report
| 01. 20. 2016
Untitled Document
Editor’s note: This essay responds to an invitation (issued here and here) to submit commentaries on the ethical implications of partnerships between social media companies and biomedical researchers. The invitation is ongoing.
Last June, the direct-to-consumer genetic testing company 23andMe announced that it had reached the milestone of 1,000,000 genotyped costumers. While the company celebrated this milestone as a “turning point” in genetic testing, we believe it is in fact cause for concern. Our concern is that the growing importance of 23andMe’s database as a resource for research – and recently also a recipient of public funding – will aggravate existing biases in disease research, leading to impoverished knowledge and exacerbated inequalities.
For over a decade, studies have drawn attention to the stark underrepresentation of people of non-European descent in genomic research. Some authors have also criticized the lack of a systematic effort to remedy this. Although several initiatives have attempted to increase population diversity in research-oriented genomic databases, the number of genotyped participants resulting from these programs is still relatively small. The Exome Aggregation Consortium...
Related Articles
By Don Sapatkin, Managed Healthcare Executive | 09.20.2024
Gene therapy comes with the expectation that it will “cure” an expanding number of genetic disorders. If you’ve never wondered – and even if you have -- what that word actually means, four Dutch researchers have a surprise in store...
By Heidi Ledford, Nature | 09.17.2024
For most of her life, Genesis Jones’s daily routine revolved around her illness, the painful blood disorder known as sickle-cell disease. Each time she left the house, she ran through a mental checklist: did she have her pain medications...
By Gabby Del Valle, The Baffler | 09.17.2024
IT’S A COMMON STORY, banal, even: a child of privilege, an heir apparent, leaves for college to get a good enough education—and maybe have a little fun—before taking over the family business. But the child, away from the nest for...
By Katie Palmer and Usha Lee McFarling, Stat | 09.03.2024
Photo by Hush Naidoo Jade Photography on Unsplash
Pediatrician Alexandra Epee-Bounya had had enough. In her 20 years caring for children in Boston, she had seen hundreds of kids with suspected urinary tract infections. Each time, she’d turn to a...