Human Genetic Code

Dec 23, 2010 | Uncategorized

Baroness Sharp of Guildford asked Her Majesty’s Government:

    What are the immediate next steps they plan to take in the light of the unravelling of the human genetic code announced on 26th June.

The Minister for Science, Department of Trade and Industry (Lord Sainsbury of Turville): My Lords, the Government will work actively to ensure that the promised benefits are delivered. In the last comprehensive spending review, the Government increased the budgets of the relevant research councils by £142 million over the period to 2002 in order to expand research into human genetics. Work on post-genomics will continue to be a major priority for the future. The Government are also very conscious of the important social and ethical issues that this scientific breakthrough will raise. We set up the Human Genetics Commission earlier this year to consider these issues and to consult widely with the public.
Baroness Sharp of Guildford: My Lords, I thank the Minister for that Answer. Does the noble Lord agree that one of the most pleasing aspects of this breakthrough, which was the result of teamwork on the part of 18 countries, is that the knowledge derived from the project has been kept within the public domain? However, is the Minister confident that we can maintain that position? Can he tell us what is the current position of the American courts; for example, will they be able to withstand the pressures for patenting that are placed upon them?
Further, given that the British contribution to the project was funded by the Wellcome Foundation and that two-thirds of the American contribution was funded by the Federal Government, is the Minister confident that our universities and research institutes are in a position to be able to exploit the wealth of material that is now available to scientists in this country, rather than losing them overseas?
Lord Sainsbury of Turville: My Lords, the noble Baroness has asked several supplementary questions. As regards the public domain, the answer is no. All that can be guaranteed is that the partners to the Bermuda Agreement who agreed in 1998 that they would make such information public will continue to do so. That is the policy of the Federal Government and, indeed, of the Wellcome Foundation. Other bodies that gain information about the human genome through their own efforts can take whatever decisions they wish about making it public.
That, of course, is a completely different question from that of patenting, which was addressed by the Blair/Clinton declaration on the human genome. One must ensure that someone cannot obtain a patent unless he puts the information into the public domain. The main issue there is to define exactly where a patent can be issued. Everyone has agreed that one cannot
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patent the broad data and that utility and invention must be involved. However, the question is how one defines that. That will be a difficult issue.As regards university exploitation, our universities are in good shape to undertake that. We have given them extra money. They are in a position to undertake the next stage of research to develop medical benefits from the information.
Lord Alton of Liverpool: My Lords, I accept what the Minister said about the imperative for good science and good ethics to march hand in hand. However, does not he agree that the process would have greater credibility if the Human Genetics Advisory Commission had at least one dissenting voice among its membership? It will not be accepted as a credible body to examine the ethics of genetics as regards future human cloning unless it has dissenting voices in its membership. Does not the Minister accept that civil liberties issues–confidentiality, privacy, and the big vested interests of the insurance industry, which has so much to gain from some of the measures that are being promoted–also need to be weighed in the balance? Will he set himself entirely against eugenic practices that may emerge from the advances?
Lord Sainsbury of Turville: My Lords, the Human Genetics Commission has only just been set up. Therefore, it is too early to ask whether its membership includes dissenting voices. However, given the fact that the noble Baroness, Lady Kennedy of The Shaws, is its chairman, and given her performance in this Chamber on a number of occasions, we can be certain that there will be at least one dissenting voice! It is absolutely clear that the matters the noble Lord raised with regard to eugenics will not be tolerated under our system.
Lord Walton of Detchant: My Lords, does the Minister agree that the potential benefits for human health arising out of this development are enormous but that in the first instance it is likely within the not too distant future that genes which confer susceptibility to various diseases will be identified, thus allowing measures to be taken where appropriate in preventive medicine, and that in the longer term the prospect of gene therapy being used to cure some at present fatal disorders will also arise? Does the Minister also agree that the legal issue is important? The discovery of a human gene can be patented only if there is, as he said, an element of invention involved.
Lord Sainsbury of Turville: My Lords, I totally agree that the benefits of this development are huge. It will enable us soon to identify genes which confer susceptibility to various diseases. That enables preventive measures to be taken. In the long term there is the possibility of gene therapy. While we should be conscious of those benefits we should proceed carefully as regards the ethical and social issues that are involved.
Lord Clement-Jones: My Lords, the noble Lord, Lord Walton, mentioned the benign effects of genetic
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testing. However, many of us are concerned about genetic testing for insurance purposes. Only last week the Government’s Genetics and Insurance Committee published its application form for use by insurance companies when applying for approval of certain genetic tests. Should we not consider whether those tests should be used at all? Have not the Government already sold the pass?
Lord Sainsbury of Turville: My Lords, noble Lords will be aware that genetic tests are currently used. Anyone who has undergone a medical for life insurance purposes is asked questions, the sole purpose of which is to determine whether he or she has any genetic susceptibility. The issue of genetic testing for insurance purposes is an extremely complicated one. Again, we need to proceed carefully in that area. The Government have set up the Genetics and Insurance Committee to assess whether any of the tests have actuarial predictability to enable them to be used. The Association of British Insurers has agreed that if the tests fail that assessment they will not be adopted.
There are other important social issues that need to be addressed. We have asked the Human Genetics Commission to keep those issues under review. It is not a simple matter of being able to abandon the tests easily, given that they already exist. There is also the following difficult issue; namely, that if people were able to keep the results of the tests secret, one would have what is called in the trade “adverse selection” in the sense that people would be able to obtain life insurance of a high value without the insuring company having access to the relevant information.
Lord Elton: My Lords, the noble Lord has revealed that there are international agreements, at least in a narrow range, on matters of patentability. However, on the more worrying issues of eugenics there is no international agreement. Is this not an area in which we should be concerned outside our own shores as well as in this country?
Lord Sainsbury of Turville: My Lords, there are some patenting agreements but, as a whole, this is an area where each country has its own patenting laws. That is one of the difficulties in that there is not a universal agreement on these issues. However, there is a European directive on patenting and therefore there is a common European position on this matter.
I think that everyone would wish to see an agreement established on eugenics. However, there is no such agreement at present. I do not think that at the moment it is a particular issue.

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