New laws are needed to prevent the misuse of genetic samples, the Government’s genetic advisors have warned. If the slide towards a ‘Big Brother’ society is to be halted, the Human Genetics Commission (HGC) says tougher measures are needed to make it a criminal offence to test someone’s DNA or access their genetic information without their consent.
In a new report, the commission expresses concern about the ease with which DNA tests can be conducted without the consent of all the parties involved. Thousands of DNA tests are carried out in the UK every year and because it is now so cheap to have a sample analysed, there are fears that the system could be open to abuse.
The Chairman of the HGC, Baroness Helena Kennedy QC, warned that possible misuses could arise if, for example, a woman became suspicious that her daughter-in-law had conceived a child during an extra-marital affair, and arranged secret tests to establish the child’s paternity. She noted that the recent high profile case of Hollywood producer Steve Bing, whose dustbin was searched for a scrap of dental floss in an attempt to establish his paternity of a child, demonstrated that such concerns were not based on fantasy. Commenting on the need for legislation she added: ‘This sort of activity is a gross intrusion into another’s privacy and there is no sufficient legal protection to prevent this at the moment. This is why we are recommending a criminal offence of deceitfully obtaining or analysing another person’s genetic information for non-medical purposes.’
In the past, a substantial drop of blood, saliva or semen was needed to obtain useful information about a person’s genetic makeup. Now however, the traces of saliva left on a glass or a smudge of sweat from a finger could be sufficient. In an interview with the Times, Baroness Kennedy said, ‘It may even be possible to say, one day, the person who committed this crime is a tall person with red hair who suffers from diabetes’.[1]
However, the report, Inside Information - Balancing interests in the use of personal genetic data, also called for an independent body to oversee DNA databases used by the police and by medical researchers, including the collection held by the Home Office, which is reported to contain 1.5 million samples.[2]
The commission also insisted that genetic information collected for medical research purposes should be kept strictly confidential and legally protected. This is on the basis that it is an individual’s right to have their autonomy protected, but that ultimately genetic research will benefit the whole of society. Although under UK law data from a person’s DNA can be reused for research without their consent, individuals have a right to expect that information from the sample would remain confidential and would not be used to discriminate against them. Although there is no evidence of this happening in the UK, the report also recommends that employers must not demand that an individual take a genetic test as a condition of employment.
The commission hopes that if the recommendations are implemented they will improve public trust in the science industry at the same time as enabling advances in the field of medicine. However, the proposals have already sparked widespread criticism. The pressure group Human Genetics Alert said that the commission had failed to back a ban on discrimination, and had merely called for the Government to consider such a move. The group’s coordinator, Dr David King, described the report as ‘weak’ and said: ‘Instead of protecting the public, the [commission] seems scared to offend the medical research establishment.’
Writing in the Times, the commentator Matthew Parris noted that although the report focused on privacy, the protection of one individual’s rights often leads to the denial of another’s.3 Citing the example of the paternity test, he remarked that in most cases a person would be unwilling to allow a strand of his hair to be tested because he hoped to dishonour an obligation, namely supporting the child. However, if the Government were to adopt the recommendations, such tests would become illegal anyway.
The use of genetic testing must surely be welcomed if it means the guilty are brought to justice, whatever their crime. But there is no escaping the fact that information that can be gleaned from DNA could lead to the exploitation of vulnerable groups, or even discrimination against those with special needs. However, we must guard against the ‘geneticisation’ of society - reducing us to nothing more than the product of our genetic inheritance. As human beings created in God’s image,[4] we are worth far more than this.
Some would argue that there is nothing philosophically distinct about genetic testing; it is simply a means of establishing a useful truth, as the microscope and camera once were. However, the truth it reveals - our genetic fingerprint - is completely unique yet indelibly marked with the fingerprint of our creator. He calls us to be stewards of the rest of his creation and this means employing the products of scientific progress in ways that glorify him.
