ArticleBMC medical genomics2012
The role of disease characteristics in the ethical debate on personal genome testing.
Article in BMC medical genomics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 2 of them syntheses that pooled it.
What it found
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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
13 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Polygenic risk scores in the clinic: a systematic review of stakeholders' perspectives, attitudes, and experiences.European journal of human genetics : EJHG · 2025Pooled it
- Use of next generation sequencing technologies in research and beyond: are participants with mental health disorders fully protected?BMC medical ethics · 2012Pooled it
- When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing.AJOB empirical bioethicsTrial
- The ethical aspects of human organ-on-chip models: A mapping review.Stem cell reports · 2025Review
- Ethical and social issues in prediction of risk of severe mental illness: a scoping review and thematic analysis.BMC psychiatry · 2025Article
- A systematic approach to the disclosure of genomic findings in clinical practice and research: a proposed framework with colored matrix and decision-making pathways.BMC medical ethics · 2021Article
- Attitudes to incorporating genomic risk assessments into population screening programs: the importance of purpose, context and deliberation.BMC medical genomics · 2016Article
- Ethical challenges in teaching genetics for medical students.Journal of microbiology & biology education · 2014Article
- Motivations of Patients with Diabetes to Participate in Research.AJOB empirical bioethics · 2014Article
- Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process.European journal of human genetics : EJHG · 2013Article
- Genomic sequencing for psychiatric disorders: promise and challenge.The international journal of neuropsychopharmacology · 2013Article
- A tiered-layered-staged model for informed consent in personal genome testing.European journal of human genetics : EJHG · 2013Article
- How the electronic health record will change the future of health care.The Yale journal of biology and medicine · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCompanies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests. DISCUSSION: In this paper, we identify and discuss four disease characteristics--severity, actionability, age of onset, and the somatic/psychiatric nature of disease--and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions. SUMMARY: We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.
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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.