Government advisors fail to protect public's genetic interests

Human Genetics Alert (HGA;1) today criticised the Human Genetics Commission for failing to protect people from the effect of the genetics revolution.  The Commission's report on personal genetic information pulls its punches in key areas including:

Genetic privacy :

the Commission's proposed legislation on genetic privacy only covers a narrow set of circumstances, and fails to establish the basic right of genetic privacy. The Information Commissioner has admitted that the Data Protection Act may fail to protect donors against 'inappropriate disclosure' from genetic research (2).  Clear genetic privacy legislation is especially needed, given that Parliament is likely today to pass regulations allowing researchers and NHS staff access to patients' confidential medical data, without consent (3).

Genetic discrimination:

the Commission only proposes that the Government 'consider' legislation against genetic discrimination by insurers, whilst proposing no more than monitoring and voluntary notification by employers of the use of genetic tests.  HGA calls for immediate legislation to ban genetic discrimination.

Commercial exploitation of genetic samples:

the report does not oppose the practice of patenting genes taken from patients' samples, despite widespread public concerns about this.  Clear rules governing industry access to patients' DNA and medical data are desperately needed, but the Commission only remarks vaguely that 'a morally sensitive regime can and should be worked out'.

HGA Coordinator, Dr David King, said: "I am very disappointed by this weak report, which does little to take the debate forward.  I am reminded of Sherlock Holmes' case of the watchdog that did not bark.  Instead of protecting the public, the HGC seems scared to offend the medical research establishment.  After all the medical scandals, surely we deserve something better."

 Notes for editors

1. Human Genetics Alert is an independent watchdog group, funded by a leading British charity.

2. Information Commissioner's submission to Human Genetics Commission, cited in the HGC's 'Comments to inform the Government response to the House of Lords report on Genetic Databases', June 13th 2001.

3. The Health Service (Control of Patient Information) Regulations 2002 will debated in the House of Lords on May 21st.

About us | Join/Contact us | Publications | Issues | Press releases| Links | Home