Personal Genetic Information: protecting people

Alexander McCall Smith,
Vice Chairman, Human Genetics Commission

1. The background to the HGC

• Set up by Government in 1999 to advise on legal, social and ethical aspects of human genetics
• Note that this is an advisory commission (cf HFEA, which has regulatory functions)
• Membership drawn from wide range of interests and backgrounds
• Works in the open

2. Who is on the Commission?

• Chaired by Baroness Helena Kennedy QC. Vice-Chair Professor Sandy McCall Smith.
• ½ science - clinical, research and commercial genetics.
• ½ "lay" - law, ethics, consumer, sociology and disability rights.
• Representatives from HFEA, the 4 CMOs, DoH and OST.

3.  Major Policy Considerations

• Intense public and media interest in certain areas of science and medicine
• Importance of securing public trust if research is to be unimpeded
• Science policy discussions should be conducted openly

4. What Has the HGC done?

• Consulted public on a work plan - agreed with Ministers in May 2000
• Initiated a detailed survey of people’s attitudes to human genetics.
• Sub groups to take forward detailed work on genetic services, public involvement and horizon-scanning.
• Establishing a panel of those affected by genetic disorders to consult on options, draft reports and emerging issues.

5. How has the HGC approached these tasks?

• Identification of major issues
  • Personal genetic information
  • Genetic testing issues  (over-the-counter tests etc)
  • Broader ethical issues (reproductive matters; "genetic choice")

6. Personal Genetic Information

• Evidence of major public concern over genetic discrimination
• MORI survey conducted by HGC reveals public concern that personal genetic information could be abused by employers, insurance companies etc
• Some degree of mistrust of the perceived direction of genetic research (reproductive cloning as a symbolic issue)

7. MORI results on genetics and employment

• 50% feel employers should not see genetic test results tests to see whether the employee, or potential employee, may become a risk to colleagues or members of the public.
  (38% say it is appropriate)
  
• 70% feel employers should not have genetic test results to see if employees, or potential employees, are likely to become prone to an inherited disease or disability.
  
• 65% feel that employers should know genetic test results that show is an employer, or potential employee, is sensitive to workplace substances or conditions.

8. The HGC's work on
personal genetic information

• November 2000 publication of "Whose hands on your genes?"
• Large-scale consultation exercise which includes     responses from individuals and organisations
• Report currently under preparation
• Publication in Easter 2002, but some work will continue,
  e.g. "BioBank UK research database

9. Obtaining and handling personal genetic information

• Development of general principles
  • Confidentiality
  • Respect for persons (consent)
  • Genetic solidarity
• Analysis of existing provisions
  • Data Protection Act
  • Codes of conduct (professional controls)

10. Report on genetic information (cont.)

• Extend to wider non-medical uses (insurance, forensic uses and paternity testing)
• Links between insurance and employment - pensions, annuities, ill-health retirement, critical illness, private healthcare
• Experience in the US - "genetic discrimination".

11. Genetics and employment - the story so far

• Human Genetics Advisory Commission report in 1999
• No evidence of use of genetic tests.
• Proposed 5 policy principles
• Government response to HGAC report - review in 2005
• Government seeking advice on amending Disability Discrimination Act
• Draft Code of Practice from the Information Commissioner.

12. Genetic information in employment.

• No evidence of UK employers offering genetic tests
• Institute of Directors - no support for compulsory testing
• MoD changed policy on testing pilots for sickle cell disease
• Police elimination database - not predictive genetic testing
• Existing test results may be use in pre-employment check-ups
• Pharmacogenetic tests - possible use by employers?

13. Genetics and Occupational Health

• Genetic testing for workplace risks might be acceptable to public.
• BUT what factors and principles might govern its use?
  • Wholesale screening or use pre-existing test results?
  • Who has access to the results?
  • What about fears of unfair discrimination ?
  • Does it change duties on employers to control exposure?
• What is the likely timescale for reliable tests?