"The truth is out there" - Commentary on "Move to outlaw secret DNA testing by fathers"
by Barry Pearson
[ Previous page | Title page | Next page ]

Commentary on a newspaper article (end)

She added: "Personal genetic information is special and people are entitled to feel that it is particular to them and the use of it should require consent, or should be done with the authority of the police, or the courts."

I believe that the above statement really applies to information about one's genes (non-junk DNA), rather than information about one's biological relationships (junk DNA). It may apply to the latter if there were a database of biological relationships, but (except perhaps for the CSA's computer system) that doesn't exist.

The privacy and ethical issues about knowledge of one's genes - in effect, the recipe used to develop your body - are vastly different from those of knowledge of one's biological relationships, and must be analysed separately. Knowledge of one's genes provides a unique insight into your body. Using genetic tests to determine a biological relationship is simply yet another way of doing so, although a very good method.

An estimated 10,000 paternity tests are now carried out each year. Many of the checks are conducted under the scrutiny of the Child Support Agency or the courts, but there are an increasing number of internet DNA testing services available for private use.

There are more than 60 organisations offering (in English) home testing kits for "motherless" paternity tests on the Internet, often internationally. Some are in the UK, but the vast majority of them are elsewhere, mostly in the United States, but also in Australia, Austria, Belgium, Canada, Germany, Korea, Malta, The Netherlands, and Sweden. There are presumably many more in other languages. The number perhaps doubles every 7 years.

This shows the scale of the task that would be faced if it were decided to prevent use of these services. But, more important, it shows the scale of the desire to know the truth about one's biological relationships. This desire is not a new phenomenon - it has been behind many social and sexual practices for millennia. What has now happened is that this pent-up drive, apparently part of human nature, can now be satisfied.

Attempts to suppress this desire to know the truth will surely fall foul of the "law of unintended consequences" - it will simply result in other ingenious but less desirable behaviour. Which would be better - driving the problem "underground", and forcing men and children to seek the truth via paternity testing services of unknown quality elsewhere, or having suitable paternity testing services of controlled quality available in the UK?

Knowledge about one's biological relationships is not just about curiosity. Apart from the potential child support liability mentioned earlier, the diagnosis and therapy of genetic disorders is placing an increasing emphasis on such relationships. There are already hundreds of identified genetic disorders, and in some cases a desired aim is to track from someone diagnosed with the disorder to potential carriers of the defective gene, for screening, counselling, or therapy.

In a recent case the mother of a child she had put up for adoption was unable to pass the news to the child that the child may have inherited a genetic disorder. This was an example of the problem for children that can arise when genetic relationships cannot be tracked. Clarity of biological relationships is increasingly important.

A Government code of conduct published last year stipulates that for children, the consent of both mother and father should be obtained.

The code is, however, voluntary and there are fears that some internet companies, particularly those based overseas, might be allowing tests to be carried out without the proper parental consent.

The "Code of Practice and Guidance on Genetic Paternity Testing Services" (Department of Health, March 2001) was largely focused on paternity tests for "official" purposes. It is therefore unable to handle properly the different requirements of tests for very different purposes, including "peace of mind" tests.

The "Case 1" and "Case 2" described earlier illustrate that "proper parental consent" need not include the mother when the test is for personal knowledge such as "peace of mind". Her position may be in conflict with the best interests of all other parties, including the child. Different guidance is needed for "official" and for personal knowledge paternity tests.

Under the Human Genetics Commission's recommendations, which are expected to be accepted by ministers, a father seeking a paternity test would have to obtain the consent of the mother, or gain a court order.

Does the Inside Information Report say this? There appears to be no recommendation that in all circumstances the mother needs to know about such a test. And the Code of Practice appears to permit a man with parental responsibility to commission a motherless test without the mother's knowledge or permission.

See "Case 1" earlier - "peace of mind" paternity tests will in the majority of cases be beneficial to the mother, the man, and the child if they provide information to the commissioner of the test by private means, rather than by a means that can only cause damage to family relationships.

"Official" paternity tests will also sometimes overrule the wishes of the mother.

It is time to rethink why the mother's consent should be seen to be important. When it is a matter of the biological relationship between a man and a child, the mother has the least to learn but is potentially the most self-interested in the result. Her interests may conflict with those of the child as well as the men concerned. In fact, the child's interests and the man's interests may be closer together than the mother's interests - a deceitful mother is probably deceiving the children as well as both men.

If "surprising paternity" is such a social and ethical problem, the answer is to reduce the problem, not paper over it.

Lady Kennedy said that making the theft of DNA illegal would also protect adults who might be the subject of clandestine testing by others seeking to identify the presence of a genetic condition, disease or previously unknown family connection.

"We all leave a trail of DNA behind. People could want to obtain someone's DNA to prove things, or disprove things, to show that some high-profile person had fathered a child, or had not fathered a child, or that somebody carried a gene for a particular disease," Lady Kennedy said.

This acknowledges the way that all of us cast our DNA into the surrounding environment. 20 years ago DNA paternity tests didn't exist. 10 years ago they needed a medical procedure such as drawing blood. With the increasing use of polymerase chain reaction (PCR), many paternity testing services simply need a buccal swab or hair follicles, and since DNA is a stable molecule, the hair can be years old. In future, the technology will enable the use of other, easily shed, cells to become commonplace. One paternity testing service talks of "cigarette butt, chewed gum, razor shavings (electric razor), a licked envelope". Others would accept a dried handkerchief or a toothbrush. Some would accept blood in various forms.

Laws (if any) on the collection of such samples must be framed with that reality in mind. They must also not bring the whole topic of regulation of genetic tests into disrepute. The consultation and debate must not have to be repeated after each technology advance.

Otherwise I have no comment to make about this.

The commission, which will publish its report this week, wants to increase the public's trust of genetics and genetic testing with new protections for individuals, while at the same time enabling advances in medicine and science to progress.

The new law on DNA privacy would mean that organisations planning to set up genetic databases for research purposes would be able to include samples only from people who had given their consent. Researchers would not be able to use the information for any purpose other than that originally described.

The commission is also expected to argue that the police should not be allowed access to these databases, as it could discourage people from taking part.

I have no comment to make about this.

[ Previous page | Title page | Next page ]
Page last updated: 2 July, 2003 © Copyright Barry Pearson 2002