ArticleNew genetics and society2022
"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.
Article in New genetics and society, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 15 citations in OpenAlex.
- Exploring perspectives of interest-holders on the use of health and genomic data from deceased participants in research: An updated systematic review.Journal of genetic counseling · 2026Pooled it
- Direct letters to relatives at risk of hereditary cancer-a randomised trial on healthcare-assisted versus family-mediated risk disclosure.European journal of human genetics : EJHG · 2025Trial
- Article
- Development of a digital risk-prediction tool based on family health history for the general population: legal and ethical implications.Journal of community genetics · 2025Article
- Who has the responsibility to inform relatives at risk of hereditary cancer? A population-based survey in Sweden.BMJ open · 2024Article
- Cascade genetic testing in hereditary cancer: exploring the boundaries of the Italian legal framework.Familial cancer · 2024Article
- Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.European journal of human genetics : EJHG · 2024Review
- Returning Individual Research Results from Digital Phenotyping in Psychiatry.The American journal of bioethics : AJOB · 2024Article
- To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes.Journal of medical ethics and history of medicine · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
Abstract
Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics- in which genetic information, privacy, and autonomy are considered to be familial- endorsed in UK genomic medicine and by participants in a multi-method study of U.S. research participants presented here. The dilemma reflects a conflict between U.S. legal and ethical frameworks that privilege "the individual" and exclude "the family" versus actual human genetics that are simultaneously individual
Indexed as
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.