ArticleJournal of community genetics2014
Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies.
Article in Journal of community genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 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
8 citing papers in PubMed.
- Psoriasis and Genetics.Acta dermato-venereologica · 2020Review
- 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
- Predictive genetic testing, risk communication, and risk perception: an international expert meeting in Berlin, Germany.Journal of community genetics · 2014Article
- The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research.Clinical sarcoma research · 2013Article
- Consumers on the Internet: ethical and legal aspects of commercialization of personalized nutrition.Genes & nutrition · 2013Article
- Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.Applied & translational genomics · 2012Article
- From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.AJOB empirical bioethicsArticle
- Direct-to-Consumer Genomics: Harmful or Empowering?: It is important to stress that genetic risk is not the same as genetic destiny.Missouri medicineArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In this paper, I investigate ethical and policy aspects of the genetic services and web-rhetoric of companies offering genetic information direct to consumer, and I do so with a special focus on genetic risk information. On their websites, the companies stress that genetic risk testing for multifactorial complex medical conditions such as cardiovascular disease and cancer may empower the consumer and provide valuable input to personal identity. Critics maintain, on the other hand, that testing can be psychologically harmful, is of limited clinical and preventive value, and vulnerable to misinterpretation. I stress the importance of empirical studies in assessing the pros and cons of direct-to-consumer testing and point out that recent empirical studies indicate that this testing is neither as harmful as feared by critics nor as empowering as promised by the companies. However, the testing is not entirely harmless. Remaining problems include testing of third parties without consent and ownership of genotypic and phenotypic information. Moreover, the testing, although not particularly empowering, may still provide input to self-understanding that some people find valuable. Regarding policy-making, I suggest that self-regulation in terms of best practice guidelines may play an important role, but I also stress that national and international regulation may be necessary.
Identifiers
What OpenQuestion holds
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.