ArticleJournal of medical ethics2015
Direct-to-consumer genomics on the scales of autonomy.
Article in Journal of medical ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
21 citing papers in PubMed.
- Pilot Evaluation of a Digital Pretest Education Platform for Genomic Counseling: Perspectives of Health Care Providers and Patients.Journal of genetic counseling · 2026Article
- Acceptability, consideration, intention, and uptake of six common types of direct-to-consumer genetic tests in the Netherlands.Journal of genetic counseling · 2025Article
- Changes in acceptability, consideration, intention, and uptake of direct-to-consumer genetic tests in the Netherlands from 2017 to 2022.Journal of genetic counseling · 2025Article
- Policy Guidance for Direct-to-Consumer Genetic Testing Services: Framework Development Study.Journal of medical Internet research · 2024Review
- Ethics of Buying DNA.Journal of bioethical inquiry · 2022Article
- Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.European journal of medical genetics · 2021Article
- The End of Genetic Privacy in the Blade Runner Canon.Journal of literature and science · 2021Article
- Article
- Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.The Hastings Center report · 2018Article
- Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape.Journal of community genetics · 2018Article
- Genetic and Genomic Consultation: Are We Ready for Direct-to-Consumer Telegenetics?Frontiers in genetics · 2018Article
- Behavioural changes, sharing behaviour and psychological responses after receiving direct-to-consumer genetic test results: a systematic review and meta-analysis.Journal of community genetics · 2018Review
- Ethical issues in neurogenetics.Handbook of clinical neurology · 2018Review
- Third party interpretation of raw genetic data: an ethical exploration.European journal of human genetics : EJHG · 2017Review
- Direct-to-Consumer Genetic Testing: User Motivations, Decision Making, and Perceived Utility of Results.Public health genomics · 2017Article
- Open sharing of genomic data: Who does it and why?PloS one · 2017Article
- Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine.BMC medical ethics · 2016Article
- Socio-Genomics and Structural Competency.Journal of bioethical inquiry · 2016Article
- Attitudes towards personal genomics among older Swiss adults: An exploratory study.Applied & translational genomics · 2016Article
- The audacity of interpretation: Protecting patients or piling on?Applied & translational genomics · 2014Article
Corrections and comments
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Direct-to-consumer (DTC) genetic services have generated enormous controversy from their first emergence. A dramatic recent manifestation of this is the Food and Drug Administration's (FDA) cease and desist order against 23andMe, the leading provider in the market. Critics have argued for the restrictive regulation of such services, and even their prohibition, on the grounds of the harm they pose to consumers. Their advocates, by contrast, defend them as a means of enhancing the autonomy of those same consumers. Autonomy emerges as a key battle-field in this debate, because many of the 'harm' arguments can be interpreted as identifying threats to autonomy. This paper assesses whether DTC genomic services are a threat to, or instead, an enhancement of, personal autonomy. It deploys Joseph Raz's account of personal autonomy, with its emphasis on choice from a range of valuable options. It then seeks to counter claims that DTC genomics threatens autonomy because it involves manipulation in contravention of consumers' independence or because it does not generate valuable options which can be meaningfully engaged with by consumers. It is stressed that the value of the options generated by DTC genomics should not be judged exclusively from the perspective of medical actionability, but should take into consideration plural utilities. Finally, the paper ends by broaching policy recommendations, suggesting that there is a strong autonomy-based argument for permitting DTC genomic services, and that the key question is the nature of the regulatory conditions under which they should be permitted. The discussion of autonomy in this paper helps illuminate some of these conditions.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.