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Public Consultation in Bioethics. What's the Point of Asking the Public When They Have Neither Scientific nor Ethical Expertise?
Abstract
With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public(s) need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus conferences and focus groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public(s) do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use.
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“Public input is one factor among many that should inform policy, and this input can be invaluable for assessing public understanding and areas of concern, identifying previously unrecognized ethical issues, describing facts relevant to normative arguments, avoiding solutions likely to be rejected by many, and learning from people’s lived experiences (32, 86).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [86]
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Lessons from HeLa Cells: The Ethics and Policy of Biospecimens
Beskow, L. M. (2016) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-083115-022536 · Cited by 146
“and this input can be invaluable for assessing public understanding and areas of concern, identifying previously unrecognized ethical issues, describing facts relevant to normative arguments, avoiding solutions likely to be rejected by many, and learning from people’s lived experiences (32, 86).”
Background
Metadata
- Authors
- Levitt, M.
- Affiliations
- University of Lancashire (GB)
- Corresponding author
- Levitt, Mairi
- Venue
- Health Care Analysis
- Published
- 2003-03
- Volume
- 11
- Issue
- 1
- Pages
- 15-25
- ISSN
- 1065-3058 (ISSN-L)
- 1573-3394
- OpenAlex
- W1558256156
- Cited by
- 52
- References
- 0
- Citations by year
- 2026: 3 · 2024: 1 · 2023: 2 · 2022: 3 · 2019: 1 · 2018: 3 · 2017: 1 · 2016: 5 · 2015: 1 · 2013: 2 · 2012: 4
- FWCI
- 2.03
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Health Care Analysis (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Nursing › Issues, ethics and legal aspects › Biomedical Ethics and Regulation
- Keywords
- public consultation, bioethics, public opinion survey, consensus conference, focus groups, public education, public understanding of science, expert-public relations, informed consent
- MeSH terms
- Community Participation, Genetics, Medical, Humans, Health Knowledge, Attitudes, Practice, Risk Assessment, Bioethical Issues
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