Wednesday, February 26, 2020

Direct-to-Consumer Genetic Testing: Pros and Cons

Millions of people worldwide have taken the at-home genetic test (1,2). Ancestry tests are very popular, plus there is a growing offering of health-related tests.

There is still a fair amount of uncertainty about test results and the use of personal data. In table below, there is an attempt to summarize arguments in favor or against private testing.  (This is not a recommendation in favor of taking a test). 

Useful information (Ancestry, Relatives, Health).
Privacy. Others can use your information in the way you do not know or do not want.
Some tests can be done anonymously (without providing personal details).
Privacy. Anonymous tests sound impossible. 
Help Scientific research / Benefit from scientific results
Privacy. Possible discrimination (5), possible psychological Implications 
Financial incentive for sharing data
Privacy. Not clear regulation / GDPR 
Intriguing part of the decision making around taking or not taking DTC tests is that individuals can be still identified by DNA, even if not taking DNA tests. Either genetic databases or DNA markers can be used to learn about anonymous DNA and locate an individual.
1. More than 270 Direct-to-Consumer Genetic Testing services are examined, their business models are classified in January 2020 publication of .'Valuable Genomes: Taxonomy and Archetypes of Business Models in Direct-to-Consumer Genetic Testing'. Comprehensive list of 448 DTC genetic companies is available @ publication site
2. More than 26 million people have taken an at-home ancestry test. The genetic genie is out of the bottle. And it’s not going back.
3.Opportunities and challenges of Distributed Ledger Technology in genomics: a call for Europe are summarized in the article of . Opportunities are : flexibility and access advantaged to data exchange for research, Increased security, further democratization of data. Challenges are: size of genomic data set, uncertain regulatory especially GDPR, awareness of public towards genetic data.
4. A Ledger of Me: Personalizing Healthcare Using Blockchain Technology
5. What is genetic discrimination?
6. A Systematic Review of the Psychological Implications of Genetic Testing: A Comparative Analysis Among Cardiovascular, Neurodegenerative and Cancer Diseases
8. What is anonymous sequencing?
9. Facial recognition from DNA using face-to-DNA classifiers
10. Identification of Anonymous DNA Using Genealogical Triangulation

12. The law of genetic privacy: applications, implications, and limitations

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