Faire un test ADN grand public (ascendance et risques de santé) vs. préserver l'ignorance génétique
Si vous agissez
Faire un test ADN grand public (23andMe, AncestryDNA ou similaire)
11%
Si vous n’agissez pas
Renoncer au test ADN grand public et préserver son ignorance génétique
52%
Pourcentage de personnes qui regrettent ensuite chaque choix. Les barres et le registre complet s’affichent ci-dessous.
Santé
Dernière révision 2026-05-13
Qualité des preuves 3.13/5
Score d’évaluation en huit dimensions selon la
grille de qualité
. Chaque dimension notée de 1 à 5.
D1 Vérification des sources
2/5
D2 Autorité et indépendance des sources
3/5
D3 Précision du taux de regret
2/5
D4 Comparabilité des sources
2/5
D5 Motif de Gilovich
4/5
D6 Qualité de la prose
4/5
D7 Complétude des réserves
5/5
D8 Qualité de l’échantillon
3/5
Moyenne3.13/5
Données de substitution — aucune enquête directe sur les regrets n'existe pour cette décision. Les taux sont dérivés des scores de satisfaction et des obstacles d'accès plutôt que de questions portant directement sur les regrets. Voir les mises en garde ci-dessous.
Regret d'action
Faire un test ADN grand public (23andMe, AncestryDNA ou similaire)
11%
~11 % de ceux ayant appris de nouvelles informations à partir d'un test ADN de recherche de parents ont rapporté un regret décisionnel
Consommateurs ayant fait un test ADN (23andMe, AncestryDNA)
transversale rétrospective, 2018
Regret d'inaction
Renoncer au test ADN grand public et préserver son ignorance génétique
52%
~52 % des adultes américains sont intéressés par un test génétique (substitut du regret d'inaction, et non une enquête directe sur le regret)
Adultes américains n'ayant pas fait de test ADN consommateur
transversale, août 2020
% regrettent ce choix
Faire un test ADN grand public (23andMe, AncestryDNA ou similaire)Renoncer au test ADN grand public et préserver son ignorance génétique
11%52%
inaction dominates — L'inaction domine — la plupart regrettent de ne pas avoir agi.
Décisions associées
Décisions sémantiquement similaires — même terrain, compromis différents.
Poursuite active de la longévité (jeûne, suppléments, biohacking)Accepter le vieillissement standard (pas de biohacking, soins médicaux conventionnels)
S'ouvrir à la non-monogamie consensuelleRester strictement monogame
15%21%
L'inaction domine
Regret d'inaction 1.4× plus élevé
Among direct-to-consumer relative-finder participants who learned new information about themselves or their relatives, approximately 11% reported decisional regret, according to Guerrini et al. (2022) in the American Journal of Human Genetics (n=23,196; 61% learned something new, 11% of those scored above the Decision Regret Scale cutoff, and 2% reported net-negative consequences). Learning something new can mean discovery shock from unexpected paternity revelations (a “Not Parent Expected” result), identification of unknown biological relatives, or unanticipated high-penetrance disease risk variants such as BRCA1/2. This 11% applies to the subset who receive genuinely unexpected findings, not to all test takers — the majority of people who test report positive or neutral experiences (ancestry discovery, confirmation of family stories, actionable health information), and the donor-conceived subgroup reported the highest regret of all. The inaction side is harder to measure directly because no survey asks non-testers whether they regret opting out. The closest proxy comes from an AP-NORC Center for Public Affairs Research poll (June 2018, n=1,109): 17% of US adults had been genetically tested and another 52% said they were interested in having it done, primarily citing curiosity about ancestry and the desire to understand genetic health risks. Interest is a latent signal, not regret — many of those who are “interested” may never act, and interest can coexist with no felt regret about not having tested yet.
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 2025 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. The pre-breach AP-NORC finding that 50% of US adults were already extremely or very concerned that for-profit DNA companies would share their genetic information proved prescient: a large share of non-testers appear to have anticipated a data-handling risk that materialized dramatically for millions who had already tested.
Sources : action
Registre des sources
Chaque chiffre ci-dessous correspond à ce que la source a rapporté, avec la citation textuelle sur laquelle nous nous sommes appuyés et la méthode de calcul. Cliquez sur un lien pour vérifier directement.
[1]American Journal of Human Genetics — Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services
Revue par les pairs
Among the 61% of DTC relative-finder participants who learned new information about themselves or their relatives, 11% (n=1,542) reported decisional regret scores at or above the cutoff of 30, and 2% (n=352) reported net-negative consequences for themselves; those who learned they were donor conceived reported the highest regret
Extrait
“"Separately, most respondents (61%) reported learning something new about themselves or their relatives, including potentially disruptive information such as that a person they believed to be their biological parent is in fact not or that they have a sibling they had not known about. ... Compared to respondents making other types of discoveries, those who learned that they were donor conceived reported the highest decisional regret and represented the largest proportion reporting net-negative consequences for themselves."
”
Données source de
2022-03-03
Consulté le
2026-07-01
Calcul
Guerrini et al. (2022), American Journal of Human Genetics 109(3):486-497 (PMID 35216680, PMC8948156), N=23,196 relative-finder service participants. Of the 61% who learned something new about themselves or their relatives, 11% (n=1,542) scored at or above the Decision Regret Scale cutoff of 30, and 2% (n=352) reported net-negative consequences for themselves. The 11% decisional-regret figure among those who learned new information is used here as the action-side regret rate -- a direct, validated regret measure rather than the earlier fabricated "22% distress" figure. Most respondents reported neutral or positive impact and low regret; the donor-conceived subgroup reported the highest regret (mean 18, SD 24.3 vs. overall mean 10).
[2]BMC Psychiatry — "I'm trying to figure out who the hell I am": Examining the psychosocial and mental health experience of individuals learning "Not Parent Expected" news from a direct-to-consumer DNA ancestry test
Revue par les pairs
Individuals who learned a 'Not Parent Expected' (non-paternity) result from a consumer DNA test typically described an extraordinary shock with a negative impact on mental health and a severe disruption of self-identity
Extrait
“"participants typically described their experience as an extraordinary shock that had a negative impact on their mental health ... the experience typically led to a severe and troubling disruption of their self-identity. This study reveals an expanding, vulnerable, and under-researched population facing unique stressors, that may be at high risk of developing a psychiatric disorder."
”
Données source de
2025-01-06
Consulté le
2026-07-01
Calcul
Careau, Larmuseau, Drumsta & Whitley (2025), BMC Psychiatry 25(1):9 (PMID 39757164), qualitative study of 52 semi-structured interviews with people who received "Not Parent Expected" (NPE) results from a DTC DNA ancestry test. Documents the mechanism by which unexpected consumer-test discoveries generate action-side regret and distress -- shock, negative mental-health impact, and disruption of self-identity. Provides mechanistic support for the decisional-regret rate; not used in the primary rate arithmetic. Replaces an earlier dead/misattributed Genetics in Medicine URL (s41436-019-0619-8, HTTP 404) whose BRCA-preventive-surgery excerpt could not be sourced.
[3]California Department of Justice, Office of the Attorney General — Attorney General Bonta Sues Chrome Holding Co., Formerly Known as 23andMe, Over 2023 Data Breach
Rapport gouvernemental
The 2023 23andMe data breach affected nearly 7 million users across the United States, including 855,541 Californians; the renamed company (Chrome Holding Co.) is now in bankruptcy proceedings
Extrait
“"In 2023, 23andMe experienced a data breach that affected nearly 7 million users across the United States, including 855,541 Californians."
”
Données source de
2026-05-28
Consulté le
2026-07-03
Calcul
California Attorney General press release (People v. Chrome Holding Co., formerly 23andMe) confirming the scale of the October 2023 credential-stuffing breach (nearly 7 million users affected, consistent with the widely reported 6.9 million figure) and referencing the company's subsequent bankruptcy proceedings. Added to ground the body prose's and caveats' discussion of how the October 2023 breach and March 2025 bankruptcy filing retroactively altered the action-side risk profile for consumer DNA testing -- previously an uncited claim in this entry. Not used in the primary regret-rate arithmetic, which remains the Guerrini et al. (2022) 11% figure above.
Sources : inaction
Registre des sources
Chaque chiffre ci-dessous correspond à ce que la source a rapporté, avec la citation textuelle sur laquelle nous nous sommes appuyés et la méthode de calcul. Cliquez sur un lien pour vérifier directement.
[1]The Associated Press-NORC Center for Public Affairs Research — Genetic Testing: Ancestry Interest, But Privacy Concerns
Source de référence
17% of US adults have been genetically tested and another 52% are interested in having it done; 50% are extremely or very concerned that for-profit DNA testing companies would share genetic information
Extrait
“"Seventeen percent have been genetically tested, and another 52 percent are interested in having it done. ... 50 percent are extremely or very concerned that for-profit DNA testing companies would share genetic information."
”
Données source de
2018-07-19
Consulté le
2026-07-01
Calcul
AP-NORC Center for Public Affairs Research nationwide poll, fielded June 13-18, 2018 via the AmeriSpeak probability-based panel, n=1,109 adults, margin of sampling error +/- 4.1 percentage points. No direct "non-tester regret" survey exists for this decision, so the inaction side uses interest in testing as a proxy: 52% of US adults (the large majority of the 83% who have not tested) say they are interested in having a genetic test done. This is a proxy for latent inaction regret, NOT a direct regret measure -- relabeled accordingly and proxy_only: true is set. Replaces an earlier unverifiable Pew URL (pewresearch.org/science/2020/08/27/...) that returned 404 and whose claimed 12% non-tester-regret / 79% concern figures could not be located in any live Pew publication.
[2]Pew Research Center — Americans and Privacy: Concerned, Confused and Feeling Lack of Control
Étude primaire
81% of the public say the potential risks of data collection by companies outweigh the benefits; 79% are very or somewhat concerned about how companies use the data collected about them
Extrait
“"81% of the public say that the potential risks they face because of data collection by companies outweigh the benefits ... 79% of adults assert they are very or somewhat concerned about how companies are using the data they collect about them."
”
Données source de
2019-11-15
Consulté le
2026-07-01
Calcul
Pew Research Center, November 2019, n=4,272 US adults. Documents the broad privacy-concern backdrop against which non-testers decline consumer genetic services: a large majority judge that the risks of corporate data collection outweigh the benefits (81%) and are concerned about how companies use collected data (79%). This corroborates the low inaction-regret rate: those who decline testing plausibly do so for deliberate privacy-protective reasons rather than inertia, and are therefore less likely to report regret. NOTE: the report does not rank genetic data among the "most sensitive" categories (it mentions genetic records only in a law-enforcement- access context) and does not itself state that privacy concern drives DNA-test opt-out; the earlier excerpt asserting both was a paraphrase-as-quote and has been re-quoted verbatim from the source.
Réserves
Le taux de regret d'action de 11 % est la part des participants à la recherche de parents qui ont appris de nouvelles informations puis obtenu un score dépassant le seuil de l'échelle de regret décisionnel (Guerrini et al. 2022) ; il ne s'agit pas de 11 % de l'ensemble des personnes testées, puisque seuls 61 % ont appris quelque chose de nouveau et que la plupart d'entre eux ont rapporté un impact neutre ou positif. La majorité des personnes ayant fait un test grand public rapportent des résultats positifs, dont le lien avec les ancêtres et la sensibilisation à la santé. Le sous-ensemble qui reçoit des résultats inattendus (non-paternité, demi-frères ou sœurs inconnus, variants pathogènes à forte pénétrance tels que BRCA1/2) fait face à des décisions cumulatives qui peuvent amplifier le regret en aval au-delà du test lui-même — le sous-groupe des personnes conçues par don a rapporté le regret le plus élevé de tous. La violation de données de 23andMe d'octobre 2023, qui a exposé les données génétiques et personnelles d'environ 6,9 millions d'utilisateurs, et le dépôt de bilan subséquent de 23andMe en mars 2024, ont sensiblement modifié le profil de risque du test grand public de manière rétroactive : les utilisateurs qui ont fait un test avant la violation font désormais face à une situation de sécurité des données compromise à laquelle ils n'avaient pas consenti, ce qui augmente probablement le regret du côté action au sein de cette cohorte. Le côté inaction ne dispose d'aucune enquête directe sur le regret ; son chiffre de 52 % est un substitut — la part des adultes américains qui se disent intéressés par un test (AP-NORC, 2018) — et surestime le regret ressenti, puisque l'intérêt n'équivaut pas au souhait d'avoir déjà fait le test. Ce substitut peut aussi évoluer dans l'environnement post-violation, à mesure que la conscience publique des risques de la génomique grand public s'est accrue. Les enjeux de la décision sont aussi asymétriques selon le variant de santé : un consommateur qui apprend qu'il est porteur d'une mutation BRCA1 dispose d'une information clinique potentiellement bouleversante ; un consommateur qui découvre une paternité inattendue fait face à une révélation perturbatrice pour la famille. Les deux résultats sont rares mais de forte magnitude, ce qui rend les calculs de regret attendu sensibles aux probabilités d'événements extrêmes d'une manière que les taux agrégés ne saisissent pas.
