GENETIC counsellors are breaking their own rules by telling people what
they should do instead of letting them make their own minds up on issues
surrounding inherited disease, a study has found.
Counselling on genetic diseases is supposed to be objective and
鈥渘ondirectional鈥� so that people can make their own decisions about whether or
not to have children, for example. But experts on genetic counselling from two
British medical schools have found that this is often not the case.
Researchers from Guy鈥檚 Hospital, London, and Addenbrookes Hospital in
Cambridge analysed the transcripts of 131 counselling sessions, mostly revolving
around decisions about reproduction. The sessions were conducted by 11 trained
counsellors who were either doctors or nurses. The researchers looked at whether
the counsellors avoided making judgments, or stated what was 鈥渂est鈥� for the
client, and whether they agreed or rejected a client鈥檚 thoughts or
decisions.
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On average, the counsellors told the clients what was 鈥渂est鈥� for them 5.8
times per session, and whether they had made the 鈥渞ight鈥� decision 1.7 times per
session. People from lower socioeconomic groups were more likely to be given
opinions instead of plain information.
鈥淭his tells us that counsellors do make directional statements,鈥� says Theresa
Marteau, a health psychologist at Guy鈥檚, who led the research. 鈥淚t鈥檚 what we鈥檝e
suspected for a long time. It does raise the issue of eugenics.鈥�
In an editorial that accompanies the research, published in the January issue
of the American Journal of Human Genetics, Barbara Bernhardt of the
Genetics and Public Studies Department at the Johns Hopkins Medical Institutions
in Baltimore describes the degree of subjectivity revealed in the study as
鈥渁蝉迟辞苍颈蝉丑颈苍驳鈥�.
However, Bernhardt notes that very often clients actively seek the opinion of
their counsellor. In the next few years, predictive genetic tests for common
adult-onset diseases such as cancer and degenerative mental illness may become
available. As a result, Bernhardt writes, family doctors will have an increased
role in this area鈥攁nd they are obviously expected to give an opinion on
medical matters. Michael Day
鈥淪ome people want guidance,鈥� agrees Marteau. 鈥淭he most important thing about
this study is that it鈥檚 the first of its kind and hopefully it will encourage
people to start discussing these issues.鈥�