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).
Pros
|
Cons
|
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.
Literature:
1. More than 270 Direct-to-Consumer Genetic Testing services are examined, their business models are classified in January 2020 publication of J Med Internet Res.: '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: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7001042/bin/jmir_v22i1e14890_app1.xlsx
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. https://www.technologyreview.com/s/612880/more-than-26-million-people-have-taken-an-at-home-ancestry-test/
3.Opportunities and challenges of Distributed Ledger Technology in genomics: a call for Europe are summarized in the article of Eur J Hum Genet. 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 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6668357/
5. What is genetic discrimination? https://ghr.nlm.nih.gov/primer/testing/discrimination
6. A Systematic Review of the Psychological Implications of Genetic Testing: A Comparative Analysis Among Cardiovascular, Neurodegenerative and Cancer Diseases https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6295518/
7. Anonymous DNA Testing Is Here. But Who Wants It? https://elemental.medium.com/anonymous-dna-testing-is-here-but-who-wants-it-c642845fee1d
8. What is anonymous sequencing? https://nebula.org/anonymous-sequencing/
9. Facial recognition from DNA using face-to-DNA classifiers https://www.nature.com/articles/s41467-019-10617-y
10. Identification of Anonymous DNA Using Genealogical Triangulation https://www.biorxiv.org/content/10.1101/531269v1
11. Gene theft https://en.wikipedia.org/wiki/Gene_theft
https://academic.oup.com/jlb/article/6/1/1/5489401
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