Genetic underclass warning

Government advisers fear ’genetic labelling’ may lead to people being treated as less valuable than others

EXPERTS are demanding action to prevent discrimination on the grounds of an individual’s genetic make-up.

Government advisers fear "genetic labelling" may lead to people being treated as less employable, less reliable, or less valuable than others.

The Human Genetics Commission, which is meeting in Edinburgh today, has spent a year looking into the issue of access to an individual’s genetic blueprint - which could determine everything from hair colour to susceptibility to disease.

The commission said it had found high levels of public concern over possible discrimination on the grounds of a person’s genetic characteristics. In its draft report, to be unveiled today, the commission said a clear stance must be taken.

It stated: "Unfair discrimination on the grounds of genetic characteristics is unacceptable. We are particularly concerned over the possibility of ‘genetic labelling’.

"In order to avoid this, we feel it is necessary to state a strong principle of non-discrimination on genetic grounds."

The commission, which is chaired by the leading barrister, Baroness Helena Kennedy, QC, said public consultation had found people were equally opposed to such discrimination as they were to discrimination on racial, sexual or age grounds.

The move follows the commission’s call in May for an immediate moratorium for at least three years on the use of genetic tests by insurers, to prevent the creation of an "uninsurable genetic underclass".

The report, which will go to ministers after completion later this year, will also recommend that no-one should be obliged to disclose information about their genetic characteristics unless it is overwhelmingly in the public interest, such as in crime detection.

It also stated that such data should not be obtained or stored without a person’s free and informed consent, and not be passed to others without consent except for "the weightiest of reasons".

However, the report also stressed that a balance must be struck because of the potential beneficial uses of genetic information, such as in disease prevention.

It said such "genetic altruism" should always be borne in mind because much of a person’s genetic make-up was shared with others, and the fruits of genetic research could bring widespread benefits.

The report stated: "We feel it is important to see the individual as a member of society with a shared interest in medical progress and the conquest of illness."

The commission’s investigation was launched last year with a consultation document, Whose Hands on Your Genes?, and an opinion poll which showed the vast majority of those questioned were concerned about the use of personal genetic information and where technology might be leading.

The commission has acknowledged that advances in human genetics are being made at a rapid rate, which might accelerate considerably following last year's publication of the first complete sequence of the human genome.

Professor Martin Bobrow, head of medical genetics at Cambridge University, said genetic information may eventually give us clues about a person’s character. However, he warned that such data could be misused because it was likely to be just one factor in explaining an individual’s behaviour.

Professor Bobrow said: "There is a widespread perception that as more associations are discovered between genes and disease, we will be able to increasingly read things about people from their DNA results.

"However, people will be tempted to over-interpret what can be deduced."

Professor Bobrow said it was possible that people’s personalities and traits could be imprinted in their genes, but this had yet to be proved.

He said: "It could be that where we all stand on the spectrum in areas such as anxiety and aggression levels might have a genetic underpinning."

However, the academic said genetic factors were likely to play only a small part in how we behave, and a person’s lifestyle was likely to be a much greater influence.

Professor Bobrow said: "There is concern that tests based on genetic information could be developed for firms selecting new staff, which would be very poor predictors of their suitability."

He also ruled out the usefulness of genetic information helping determine whether someone may have committed a crime.

Sheila McLean, professor of law and ethics in medicine at Glasgow University, said proper monitoring of theory being put into use was essential.

She said: "We need to look very carefully at having an appropriate system to monitor research because it is such a sensitive area.

"However, with the proper safeguards, this could be a genuine revolution in healthcare. The development of stem cells has an enormous capacity to enable us to fight some diseases."

The commission’s meeting, which is open to the public, is being held from 10:30am-4:30pm today at the Scottish Executive’s conference centre at Victoria Quay in Leith.