x.com/chr1sa/status/2104256047812861953
2 corrections found
all the real issues that arose from ubiquitous DNA data, like accidentally doxing your criminal relatives with your own 23andMe data, were never imagined.
This is too absolute. Genomics ethicists had already anticipated both relatives' privacy risks and law-enforcement uses of DNA years before consumer DNA databases became widespread.
Full reasoning
The claim says these issues "were never imagined," but the record shows they were discussed well before the recent boom in consumer DNA databases.
- During the Human Genome Project era, NHGRI's own 1990-1995 ELSI program review says an early ELSI-funded study examined the use of genetic technologies for forensic and other law-enforcement uses and the associated social, legal and ethical issues.
- NHGRI also explains that genomic research has long raised implications for relatives, because a participant's genome can indirectly reveal information about family members who never consented.
- By 2010, the Personal Genome Project's published consent/risk discussion explicitly warned that public genome data could be used to "claim relatedness to criminals or incriminate relatives." That is very close to the scenario described in the post.
So the issue was not "never imagined"; it was explicitly anticipated in genomics ethics and consent literature before it became a prominent real-world problem.
3 sources
- Review of the Ethical, Legal and Social Implications Research Program and Related Activities (1990-1995)
The first (National Research Council-Zaborsky) examined the suitability of using genetic technologies for forensic and other law enforcement uses ... and the social, legal and ethical issues surrounding the use of these technologies.
- Human Subjects Research
While genomic research may reveal new information about the research participant's health, the heritable nature of genetic information raises implications for the research participant's relatives as well. Information about family members not involved in the study may be indirectly obtained through the research participant.
- Personal genomes in progress: from the Human Genome Project to the Personal Genome Project
Anyone with sufficient knowledge and resources could take your DNA sequence data and/or posted trait information and use that data ... to claim relatedness to criminals or incriminate relatives.
none of which actually came to pass.
This is incorrect as stated. There are documented cases of insurers using genetic information against people, and U.S. law was later strengthened specifically to stop health plans from using genetic information to set premiums.
Full reasoning
Saying "none" of these concerns came to pass is contradicted by documented cases and by the later legal reforms aimed at stopping exactly this type of conduct.
- A peer-reviewed case-study analysis reported two cases in which a patient asked an insurer to pay for genetic counseling and the insurer subsequently raised their rates, based on suspicion of a genetic disorder or even the possibility of testing.
- NHGRI's own "Cases of Genetic Discrimination" page also describes a case in which a family's health coverage was dropped after a child tested positive for Fragile X syndrome.
- The U.S. Department of Labor explains that GINA changed prior rules so that group health plans cannot base premiums on genetic information; before GINA, HIPAA had allowed plans to adjust premiums or contributions for a group based on genetic information. That kind of statutory change would make little sense if the concern had never materialized.
These sources do not prove genetic discrimination was universal or common, but they do clearly refute the post's absolute claim that none of the feared insurance harms ever happened.
3 sources
- Laws Restricting Health Insurers' Use of Genetic Information: Impact on Genetic Discrimination
In both instances, a patient asked an insurer to pay for genetic counseling ... and the insurer subsequently raised their rates, merely on the basis of suspicion of a genetic disorder or the possibility they might take the test, without regard to the actual results of the test.
- Cases Of Genetic Discrimination
In one reported case, genetic testing indicated that a young boy had Fragile X Syndrome, an inherited form of mental retardation. The insurance company for the boy's family dropped his health coverage, claiming the syndrome was a preexisting condition.
- Your Genetic Information and Your Health Plan Know The Protections Against Discrimination
GINA prohibits a group health plan from adjusting group premium or contribution amounts for a group of similarly situated individuals based on the genetic information of members of the group. This is a change from HIPAA's prior nondiscrimination requirements, which allowed plans to adjust premiums or contributions ... based on genetic information.