ArticleThe Hastings Center report2019
On What We Have Learned and Still Need to Learn about the Psychosocial Impacts of Genetic Testing.
Article in The Hastings Center report, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 1 of them a synthesis 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
28 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022.Orphanet journal of rare diseases · 2026Pooled it
- Impact of variants of uncertain significance on decision making about genetic testing for Hispanic males.Genetics in medicine open · 2026Article
- Ambiguities faced by parents who received a genetic diagnosis for autistic offspring with intellectual disabilities.Journal of community genetics · 2025Article
- "Holy Cow, Where do I Sign up?" Attitudes of Military Veterans Toward Epigenomic Biomarker Toxic Exposure Testing.Military medicine · 2025Article
- Discussions on Human Enhancement Meet Science: A Quantitative Analysis.Science and engineering ethics · 2025Article
- A 3D Clinical Face Phenotype Space of Genetic Syndromes Using a Triplet-Based Singular Geometric Autoencoder.IEEE access : practical innovations, open solutions · 2025Article
- Implications of Genetic Attributions for Addiction in Adults Affected by Alcohol Use Disorder and Gambling Disorder.Addiction research & theory · 2025Article
- Diagnostic yield and clinical relevance of expanded germline genetic testing for nearly 7000 suspected HBOC patients.European journal of human genetics : EJHG · 2023Article
- Polygenic Scores in the Direct-to-Consumer Setting: Challenges and Opportunities for a New Era in Consumer Genetic Testing.Journal of personalized medicine · 2023Review
- Disclosure of Genetic Risk Factors for Alzheimer's Disease to Cognitively Healthy Individuals-From Current Practice towards a Personalised Medicine Scenario.Biomedicines · 2022Review
- Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.Psycho-oncology · 2022Article
- Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health.European journal of human genetics : EJHG · 2022Article
- Perceived utility and disutility of genomic sequencing for pediatric patients: Perspectives from parents with diverse sociodemographic characteristics.American journal of medical genetics. Part A · 2022Article
- Genetic testing users in Italy and Germany: Health orientation, health-related habits, and psychological profile.Molecular genetics & genomic medicine · 2022Article
- Invited Commentary on "My Research Results: a program to facilitate return of clinically actionable genomic research findings" by Willis et al.European journal of human genetics : EJHG · 2022Article
- Underlying genetic etiologies of congenital diaphragmatic hernia.Prenatal diagnosis · 2022Review
- Towards Next-Generation Sequencing (NGS)-Based Newborn Screening: A Technical Study to Prepare for the Challenges Ahead.International journal of neonatal screening · 2022Article
- When Not to Ask: A Defense of Choice-Masking Nudges in Medical Research.Journal of health care law & policy · 2022Article
- Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI).BMC medical ethics · 2021Article
Corrections and comments
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Authors and funding
2 authors.
Funding
Abstract
Since the start of the program to investigate the ethical, legal, and social implications (ELSI) of the Human Genome Project in 1990, many ELSI scholars have maintained that genetic testing should be used with caution because of the potential for negative psychosocial effects associated with receiving genetic information. More recently, though, some ELSI scholars have produced evidence suggesting that the original ELSI concerns were unfounded, exaggerated, or, at a minimum, misdirected. At least in the contexts that have been most studied, large negative impacts have not been found in the vast majority of people studied. What might explain the discrepancy between the original hypothesized outcomes and the growing impression that large negative effects appear to be few and far between? And if the original predictions of large negative psychosocial effects were simply wrong, is it time for ELSI researchers to move on? Should genetic testing be routinized, and would it be appropriate to relax or abandon the practice of engaging patients in a process of detailed informed consent before they receive genetic information? To confront those questions, we convened a conference entitled "Looking for the Psychosocial Impacts of Genomic Information" to review what is known about the negative impacts of genetic information on a variety of populations and in multiple medical and social contexts, to explore the implications of the findings, and to consider whether future research might benefit from different methods than have been used to date.
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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.