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The Actuary The magazine of the Institute & Faculty of Actuaries

Genetics and the law

The Genetics and Law conference, organised by Dr Ian Ellis, senior lecturer in clinical genetics at the University of Liverpool, brought together practitioners from the medical, legal, and actuarial disciplines to discuss issues concerning the use of human genetic information.

Genes and ethics
A person’s genes are derived from two parents and are shared with multiple family members. They may have been passed on to a number of children. A recurrent theme at the conference was the ethical question ‘should commercial or medical priorities be allowed to override an individual’s right to privacy?’ Indeed, when it came to genetic testing, several speakers referred to ‘the right not to know’ one’s genetic make-up, along the lines of the German philosopher Jonas’s ‘the right of each human life to be a surprise to itself’. Do we have such rights if others may be affected by the knowledge?
Techniques for using genetic material have advanced faster than society has been able to consider or regulate. Almost every speaker stressed their desire for vigorous public debate. However, much of the debate centred on the legal constraints within which the medical profession, and their colleagues in pharmacology, could operate.
Dr Ian Gibson, chair of the Science and Technology Select Committee, gave a politician’s view of the social and regulatory impact of recent developments in genetics. He discussed the current topic of stem-cell research, acknowledging that the debate was ‘clouded by religious issues’. His view is that scientists and politicians can make decisions which allow scientific advances within the law, recognising that ‘science only takes place in a social environment’.

High-street genetics
Should genetic testing be freely available in the high street? Dr Gibson raised the issues of privacy, counselling, familial implications, and consumer protection, all of which will require regulation. Each of these points raises serious difficulties of interpretation of law, social imperatives, and ethical conduct.
Dr Graeme Laurie of the University of Edinburgh asked whether disclosure of genetic information can further a legitimate public interest? What is legitimate public interest? Employment and insurance may be two examples. Is there a role for paternalism? Should regulation force insurers to prove that tests are actuarially relevant?
Dr Kevin Cheeseman, of AstraZeneca, discussed genetic research from the viewpoint of the pharmaceutical industry. He pointed out that drug companies already collect DNA samples from thousands of people with fully informed consent, and store the genetic data securely and confidentially. However, it is not usual to disclose the results of any genetic testing to the subjects. Dr Cheeseman believes genetics raises the same issues as does all clinical work, but in an amplified way because of its sensitivity. Why is genetics regarded so sensitively? This is partly because of fear of the unknown, and partly because the public views genetics as invariably relating to a diagnosis of serious illness.

Genetics and Insurance
On the subject of ‘clinical genetics and insurance’, Professor Sandy Raeburn of the University of Nottingham, a former member of the Genetics and Insurance Committee (GAIC), maintained that ‘neither the clinical geneticist nor the insurance underwriter should influence a client’s decision to be tested or not’.
Professor Angus Macdonald, of Heriot-Watt University, asked rhetorically whether life insurance companies have a ‘right to underwrite’ at all. Underwriting equals discrimination, and although discrimination is accepted on the grounds of age, smoking habits, and medical history, it does not extend to ethnicity. Should discrimination based on the results of a genetic test also be limited? At present, the UK insurance industry operates according to a moratorium agreed with the government, whereby, until November 2006:
– insurers will not ask anyone to be tested;
– insurers will not use genetic test results, except sometimes for very large amounts of insurance;
– insurers will not seek out ‘good’ genes;
– family history may still be used.
In practice, only one genetic test (for Huntingdon’s disease) has been approved by GAIC for use in insurance underwriting.
Professor David Johns, chair of GAIC, quoted GAIC’s definition of a genetic test as ‘a test to detect the presence or absence of, or change in, a particular gene or chromosome’ which is ‘predictive of, or associated with, significant health effects relevant to life and/or health insurance’. He also gave a statement of the committee’s remit, making clear that it is not an advisory body, but has executive powers, reporting to the Department of Health, the Treasury, and the DTI annually ‘on compliance by insurers with the ABI code of practice and the moratorium’.

The DNA database
Dr Bob Bramley, chief scientist of the Forensic Science Service, an executive agency of the Home Office, described his position as custodian of the national DNA database. The database currently contains 1.8m DNA profiles and matches are established each month with approximately 5,000 crime scenes. He provided the audience with a detailed description of the methods police use to obtain samples, and the controls exercised on the collection, storage and use of the information. He believes the database is never likely to extend to the 60m people in the country.
Alexander McCall Smith, vice-chairman of the Human Genetics Commission (HGC), described the role of the HGC as being to promote public debate. The HGC has made a detailed survey of people’s attitudes to human genetics, and found strong public support for use of DNA in the police national computer database. However, there is widespread concern that the Data Protection Act may be inadequate.

Snippets of information
To round off the conference, Dr Brian McKeown from Cellmark introduced the audience to single pucleotide polymorphisms (SNP-ITs) pronounced snippets! The SNP-IT is the smallest unit of genetic diversity and, surprisingly, the smaller the unit of genetic information, the more information it may contain. Until now, genetic matching has been done by use of single tandem repeats (STRs) of genetic code. This method could determine only if a match occurred. With the SNP-IT, it might be possible, given a small DNA sample, not just to match it to a suspect, but in the event of a non-match to predict some characteristics, such as the possible appearance of the criminal. Imagine police sleuthing with that powerful forensic tool!
The conference, though lasting two full days, could hardly cover all the matters of importance. As a forum for debate it was limited, simply because most of the people attending were involved directly in the practice of genetics, dealing with the ethical or social problems as they arise. A deeper reflection is needed. One model for this public debate is already available under the auspices of the Australian Law Reform Commission (www.alrc.gov.au), for those readers wishing to explore the subjects more fully.