Return of genomic results to research participants: the floor, the ceiling, and the choices in between.
Explore this paper's citation graph
Summary
Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results.
- Type
- article
- Published
- 2014-06-05
- Cited by
- 378
- References
- 58
- Access
- Open access
- OpenAlex
- https://openalex.org/W1972695780
- Semantic Scholar
- https://api.semanticscholar.org/CorpusID:9597409
Keywords
Ceiling (cloud), Glass ceiling, Psychology, Political science, Engineering
References
- Hudson et al.
- Medicine. Reestablishing the researcher-patient compact.
- The First Amendment Right to Speak About the Human Genome
- RETURN OF RESULTS: ETHICAL AND LEGAL DISTINCTIONS BETWEEN RESEARCH AND CLINICAL CARE
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.
- Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing
- Ethical and Practical Guidelines for Reporting Genetic Research Results To Study Participants: Updated Guidelines from an NHLBI Working Group
- Before the best interests of the child.
- Communicating the Results of Clinical Research to Participants: Attitudes, Practices, and Future Directions
- To Test or Not to Test? The Role of Attitudes, Knowledge, and Religious Involvement Among U.S. Adults on Intent-to-Obtain Adult Genetic Testing
- Managing Incidental Findings in Human Subjects Research
- Deciding for others.
- Deciding for others: The ethics of surrogate decision‐making
- Recommendations for returning genomic incidental findings? We need to talk!
- Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group
- Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
- Before the Best Interests of the Child
- Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making.
- Respecting Patient Autonomy in Clinical Genomics: New Recommendations on Incidental Findings Go Astray
- Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium
Cited by
- Illustrative case studies in the return of exome and genome sequencing results
- Ethical Legal and Social Issues of Biobanking: Past, Present, and Future
- Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience
- MED12: A NOVEL PLAYER IN UTERINE LEIOMYOMAS
- Compare and contrast: a cross-national study across UK, USA and Greek experts regarding return of incidental findings from clinical sequencing
- Preferences for Return of Incidental Findings from Genome Sequencing Among Women Diagnosed with Breast Cancer at a Young Age
- Living laboratory: Whole-genome sequencing as a learning healthcare enterprise
- Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles
- Pediatric cancer genetics research and an evolving preventive ethics approach for return of results after death of the subject
- Whole-Exome Sequencing in the Differential Diagnosis of Primary Adrenal Insufficiency in Children
- Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and their Families
- Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study
- Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations
- Genetic Studies of Quantitative MCI and AD Phenotypes in ADNI: Progress, Opportunities, and Plans
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.
- Genomics in the clinic: ethical and policy challenges in clinical next-generation sequencing programs at early adopter USA institutions.
- Ethical Perspectives on Translational Pharmacogenetic Research Involving Children
- Five Principles: Returning Genetic Testing Results to Research Participants
- The Development of a Preference-Setting Model for the Return of Individual Genomic Research Results
- Researchers' Views on Informed Consent for Return of Secondary Results in Genomic Research
Related papers
- ИСПОЛЬЗОВAНИЕ ПОТЕНЦИAЛA СОЦИAЛЬНЫХ ПAРТНЕРОВ В ПОДГОТОВКЕ БУДУЩИХ ПЕДAГОГОВ
- DETERMINING QUALITY REQUIREMENTS AT THE UNIVERSITIES TO IMPROVE THE QUALITY OF EDUCATION
- Breaking second glass ceiling: lived experiences of women entrepreneurs in Pakistan
- How Are Socio-Demographic Characteristics Related To Women’s Glass Ceiling Beliefs?
- IS GENDER PLAYS A ROLE IN WORKPLACE?
- Women's Career Advancement and the Glass Ceiling in the Financial Services Industry
- Glass ceiling, concrete ceiling : gender equality