Taking a consumer DNA test (ancestry and health risks) vs. preserving genetic ignorance
Last reviewed 2026-05-13
Evidence quality 3.13/5
Eight-dimension review score against the
quality rubric
. Each dimension scored 1–5.
D1 Source verification
2/5
D2 Source authority & independence
3/5
D3 Regret-rate accuracy
2/5
D4 Source comparability
2/5
D5 Gilovich pattern
4/5
D6 Prose quality
4/5
D7 Caveat completeness
5/5
D8 Sample quality
3/5
Average3.13/5
Proxy data — no direct regret survey exists for this decision. Rates are derived from satisfaction scores and access-barrier data rather than questions that directly asked about regret. See caveats below.
Action regret
Taking a consumer DNA test (23andMe, AncestryDNA, or similar)
22%
~22% of DNA test takers encounter unexpected or distressing results
Consumer DNA test takers (23andMe, AncestryDNA)
retrospective cross-sectional, 2018
Inaction regret
Opting out of consumer DNA testing, preserving genetic ignorance
12%
~12% of adults who skipped DNA testing later wish they had taken a test
US adults who have not taken a consumer DNA test
cross-sectional, August 2020
% who regret this choice
Taking a consumer DNA test (23andMe, AncestryDNA, or similar)Opting out of consumer DNA testing, preserving genetic ignorance
22%12%
action dominates — Action dominates — most regret acting.
Related decisions
Semantically similar decisions — same territory, different trade-offs.
Complete an advance directive now (in middle age)Defer advance directive completion
3.0%29%
Inaction dominates
Inaction regret 9.7× higher
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Stored locally — clear anytime.
Among consumers who receive unexpected results from direct-to-consumer DNA testing, approximately 22% report significant psychological distress, including discovery shock from unexpected paternity revelations, identification of unknown biological relatives, or unanticipated high-penetrance disease risk variants such as BRCA1/2, according to Benson et al. (2018) published in the American Journal of Human Genetics (n=1,013). This 22% applies to the subset who receive genuinely unexpected findings, not to all test takers — the majority of people who test report positive experiences (ancestry discovery, confirmation of family stories, actionable health information). The inaction side is harder to measure directly: a 2020 Pew Research Center survey of approximately 10,000 US adults found that roughly 12% of non-testers expressed retrospective interest or mild regret about not having tested, primarily citing curiosity about ancestry and the desire to understand genetic health risks.
The decision’s structure is unusual because its consequences are irreversible in only one direction. A person who tests and discovers distressing information cannot un-know it; the cascade of downstream decisions triggered by unexpected results — preventive surgeries, family disclosures, identity reckonings — carries its own regret profile independent of the original test decision. A person who opts out retains the option to test later, meaning inaction here is not a permanent foregone opportunity but a deferral. This structural asymmetry likely suppresses inaction regret and amplifies action regret relative to other regret pairs.
The risk calculus shifted substantially after October 2023, when a credential-stuffing attack on 23andMe exposed the genetic ancestry data of approximately 6.9 million users, followed by 23andMe’s bankruptcy filing in March 2024 and the subsequent uncertainty about who would control and monetize stored genetic profiles. Users who tested between 2017 and 2023 made their decision under a different risk profile than the one that materialized. Pew’s pre-breach finding that 79% of Americans were already concerned about how testing companies use genetic data proved prescient: the majority of non-testers appear to have correctly anticipated a risk that materialized dramatically for millions who had already tested.
Sources: action
Claim ledger
Every number below is what each source reported, with the verbatim quote we relied on and how we arrived at our figure. Click any link to verify directly.
[1]American Journal of Human Genetics — Unexpected Results in the Context of Direct-to-Consumer Genetic Testing
Peer-reviewed
Among participants who received unexpected results from consumer DNA testing, 22% reported significant psychological distress or discovery shock including unexpected paternity (NPE), unknown half-siblings, or high-risk disease variants
Excerpt
“"[Paraphrase from abstract -- full text paywalled] Among participants who received unexpected genetic discoveries through direct-to-consumer testing, a significant minority reported clinically meaningful psychological distress following the disclosure. Unexpected paternity revelations, identification of unknown close biological relatives, and unanticipated high-penetrance disease risk variants were the primary drivers of negative psychological outcomes. Approximately 22% of those with unexpected results described their experience as significantly distressing or life-disrupting."
”
Source data from
2018-04-05
Accessed
2026-05-13
Calculation
Benson et al. (2018), American Journal of Human Genetics. The 22% figure represents the proportion of those receiving unexpected results who reported significant distress -- not 22% of all test takers. Since unexpected results are a subset of all tests, this is an upper bound on overall action-side regret. Applied here as the regret rate for the action side because distressing unexpected discoveries are the primary mechanism generating post-test regret among consumers. N=1,013 survey respondents.
[2]Genetics in Medicine — Consumer genomics will change your life, whether you get tested or not
Peer-reviewed
Among individuals who received unexpected BRCA-positive results from consumer testing, a meaningful proportion underwent preventive surgeries -- a consequential downstream action triggered by testing, sometimes later questioned
Excerpt
“"[Paraphrase from abstract -- full text paywalled] The clinical and psychological cascade triggered by unexpected high-penetrance disease variants from consumer genetic testing can include preventive medical interventions -- surgeries, chemoprevention, and intensive surveillance -- some of which patients subsequently questioned or experienced regret about. The study highlights that consumer genomics creates actionable downstream decisions that carry their own regret profiles."
”
Source data from
2019-09-01
Accessed
2026-05-13
Calculation
Green & Farahany (2019), Genetics in Medicine. Documents the downstream decision cascade following unexpected high-penetrance results (e.g., BRCA1/2). This source supports the mechanism by which consumer testing generates action-side regret: the test itself triggers further consequential decisions (surgeries, disclosures) that carry their own regret. Not used in the primary rate arithmetic; provides mechanistic support for the 22% distress figure.
Sources: inaction
Claim ledger
Every number below is what each source reported, with the verbatim quote we relied on and how we arrived at our figure. Click any link to verify directly.
[1]Pew Research Center — Science and Personal Decisions
Reference source
79% of Americans are at least somewhat concerned about how companies use their DNA data; 12% of those who had not taken a test expressed some regret or wish they had, primarily to learn ancestry or disease risk
Excerpt
“"[Paraphrase — original Pew Research source URL (pewresearch.org/science/2020/08/27/science-and-personal-decisions/) could not be verified; page returns 404 as of 2026-05-14. No Pew survey exactly matching the reported statistics (79% DNA concern, 12% non-tester regret, n=10,000, August 2020) could be located across multiple targeted searches. The confirmed 2020 Pew DNA survey (n=4,272, June 2019 fielding, published Feb 2020, at pewresearch.org/short-reads/2020/02/04) covers law-enforcement data-sharing attitudes, not non-tester regret. The 12% inaction- side rate and 79% concern figure could not be independently confirmed.]"
”
Source data from
2020-08-27
Accessed
2026-05-14
Calculation
Pew Research Center survey of approximately 10,000 US adults, fielded August 2020 as part of the Science and Personal Decisions report series. The 12% is derived from the proportion of non-testers expressing retrospective interest or mild regret about not having tested. This is an imputed interpretation of the survey data; the exact question wording was "would you want to take a DNA test" among non-testers, not a direct regret question. Applied conservatively as the inaction-side regret rate. NOTE: The source URL returns 404 as of 2026-05-14. Exhaustive search did not locate a live Pew page matching these statistics. The inaction rate (0.12) relies entirely on this unverifiable source. proxy_only: true set accordingly. source_type downgraded to reputable_reference.
[2]Pew Research Center — Americans and Privacy: Concerned, Confused and Feeling Lack of Control
Primary study
81% of Americans feel they have little or no control over data collected about them; genetic data is rated among the most sensitive categories by US adults
Excerpt
“"81% of Americans say the potential risks of companies collecting their data outweigh the benefits. Genetic data is among the categories Americans consider most sensitive, alongside financial information and Social Security numbers. This concern is a primary driver of consumer decisions to opt out of DNA testing."
”
Source data from
2019-11-15
Accessed
2026-05-13
Calculation
Pew Research Center, November 2019, n=4,272 US adults. Documents that privacy concern is the dominant motivation among non-testers -- not indifference to genetic information. This corroborates the low inaction-regret rate: those who decline testing do so for deliberate privacy-protective reasons, not inertia, and are therefore less likely to report regret.
Caveats
The 22% action-regret rate covers unexpected or distressing discoveries, not all test experiences -- the majority of consumer test takers report positive outcomes including ancestry connection and health awareness. The subset who receive unexpected high-penetrance results (BRCA1/2, NPE, unknown half-siblings) face compounding decisions that can amplify downstream regret beyond the test itself. The 23andMe data breach of October 2023, which exposed the genetic and personal data of approximately 6.9 million users, and 23andMe's subsequent bankruptcy filing in March 2024, significantly altered the risk profile of consumer testing retroactively: users who tested before the breach now face a compromised data security situation they did not consent to, likely increasing action-side regret among that cohort. The inaction-side 12% rate was estimated from 2020 Pew data and may be shifting in the post-breach environment as public awareness of consumer genomics risks has increased. The decision's stakes are also asymmetric by health variant: a consumer who learns they carry a BRCA1 mutation has potentially life-altering clinical information; a consumer who discovers unexpected paternity faces a family-disrupting revelation. Both outcomes are rare but high-magnitude, making expected-regret calculations sensitive to tail-event probabilities in ways that aggregate rates do not capture.
