The Social Security Death Index (SSDI) is a searchable database created from the U.S. Social Security Administration’s Death Master File, which contains the name and social security number of deceased persons reported to the Social Security Administration since roughly 1962.Â In addition to being used by genealogists, the Death Master File and SSDI are used by financial firms and government agencies for various reasons such as preventing identity fraud.
As part of her doctoral research, Sudeepa Abeysinghe is asking people who have purchased genomic tests to complete the â€œUser Experiences of Direct-to-Consumer Genomic Testing Surveyâ€.Â According to Sudeepa, the survey focuses on the consumer experience and is completely independent of any testing company.
Although Iâ€™m late on reporting this (it was already covered by GenomeWeb, for example), I thought I would mention it in case anyone has missed the previous coverage and might be interested in completing the survey.
This is an opportunity for genetic genealogists to share their experiences and voice their thoughts regarding DTC genomic testing.
Barbara Ameer and Norberto Krivoy of the American College of Clinical Pharmacology (ACCP) have an article (pdf) in The Journal of Clinical Pharmacology that promotes regulation of DTC genetic tests (which could conceivably include genetic genealogy tests).Â The Genomics Law Report analyzes the paperâ€™s arguments and concludes with the following:
â€œWithout convincing evidence of the harms of DTC genetic testing, it remains difficult to fully justify more rigorous governmental regulation, or to anticipate its content, structure or ultimate effect, which perhaps explains why such regulation continues to remain just over the horizon.â€
The standardized system was first published in the Fall 2008 issue (pdf) of the Journal of Genetic Genealogy (JoGG).
First, let me add a note of caution â€“ this change ONLY represents a change in how results are REPORTED.Â Even though companies report results differently, this does not mean that the actual DNA testing results are wrong or different!Â This shift is NOT to correct errors in testing results; it is only to standardize reporting.