Chapter 13. Genetic Information: Use and Abuse
- John Bryant Professor2,
- Dr Linda Baggott la Velle3,
- Revd Dr John Searle4
Published Online: 18 APR 2002
DOI: 10.1002/0470846593.ch13
Copyright © 2002 John Wiley & Sons, Ltd
Book Title
Bioethics for Scientists
Additional Information
How to Cite
Knoppers, B. M. (2002) Genetic Information: Use and Abuse, in Bioethics for Scientists (eds J. Bryant, L. B. la Velle and J. Searle), John Wiley & Sons, Ltd, Chichester, UK. doi: 10.1002/0470846593.ch13
Editor Information
- 2
School of Biological Sciences, University of Exeter, Exeter, UK
- 3
Graduate School of Education, University of Bristol, Bristol, UK
- 4
Exeter & District Hospice, Exeter, UK
Publication History
- Published Online: 18 APR 2002
- Published Print: 31 MAR 2002
ISBN Information
Print ISBN: 9780471495321
Online ISBN: 9780470846599
- Summary
- Chapter
Keywords:
- anonymisation;
- confidentiality;
- discrimination;
- employers;
- ethics;
- family;
- human rights;
- insurers;
- responsibility;
- privacy
Summary
Recent developments in human genetic research have raised new, possibly unique issues. Firstly, genetic data must remain confidential but also accessible, with permission, to researchers. Total anonymisation of samples is not helpful because it means that useful findings can never be imparted to the person concerned; coding of samples is preferable. Secondly, there is the matter of access by third parties. Both UNESCO and HUGO emphasise a person's rights to protection of confidential information from unauthorised access. In several countries, employers and insurers cannot coerce people to reveal genetic information but in others the situation is less clear, raising the possibility of discrimination. Finally there is the tension between the right of an individual to confidentiality and the needs of other family members to know about conditions that may affect them. Although no-one is obliged to share such data, it is argued that affected individuals have a responsibility to do so.