ArticleJournal of medical ethics2008
Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research.
Article in Journal of medical ethics, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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
9 citing papers in PubMed, 36 citations in OpenAlex.
- Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project.Journal of medical ethics · 2018Article
- Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results.Journal of genetic counseling · 2018Article
- How do clinical genetics consent forms address the familial approach to confidentiality and incidental findings? A mixed-methods study.Familial cancer · 2018Article
- Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.European journal of human genetics : EJHG · 2016Article
- Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria.BMC medical ethics · 2014Article
- The unintended implications of blurring the line between research and clinical care in a genomic age.Personalized medicine · 2014Article
- Parental views on informed consent for expanded newborn screening.Health expectations : an international journal of public participation in health care and health policy · 2013Article
- The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe.European journal of human genetics : EJHG · 2012Article
- Lessons learnt from large-scale exon re-sequencing of the X chromosome.Human molecular genetics · 2009Review
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
Abstract
objectivesTo study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder.
designSemi-structured interviews and analysis/description of main themes.
participants78 members of 52 families who had been recruited to a molecular genetic study.
resultsPeople were well informed about the goals, risks and benefits of the genetic research study but could not remember the consent process. They had mostly been recruited to take part by trusted clinicians or their relatives but had little memory of, or concern about signing consent forms. Families appeared to regard the research as a continuation of their, or their relatives', clinical care.
conclusionsEthical review should be more flexible in its attitude to consent forms and written information sheets for some sorts of research. For rare genetic disease studies where research has been discussed fully within the clinical setting then the consent obtained at that time could suffice rather than needing extra consent at a later stage. However, clinician-researchers will need to ensure that their duty of care extends for the duration of the research and beyond.
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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.