Joint committee on the Human Tissue and Embryos (Draft) Bill

Joint committee on the Human Tissue and Embryos (Draft) Bill First Report

APPENDIX 6: REPORT ON THE ONLINE CONSULTATION

1. In June 2007, the Joint Committee launched an online consultation as part of its inquiry into the Draft Human Tissue and Embryos Bill. The online consultation lasted for 15 days (from 11 to 26 June 2007) and invited responses to four specific questions:

Who do you think should take decisions about the use of embryos in fertility treatment—Parliament, the Regulatory Authority, or individual doctors in consultation with their patients?
Do you think that sex selection of embryos should be allowed for family balancing purposes?
Do you think that Parliament should legislate to allow the Regulatory Authority to take all decisions about licensing research into inter-species embryos?
Who do you think should take decisions about the use of embryos in research—Parliament, the Regulatory Authority, or research scientists?

2. This paper summarises the public response to the online consultation. Individual responses can be viewed at http://forums.parliament.uk/human-tissue-bill/index.php?index,1

3. A total of 153 responses to the four questions were posted and accepted onto the website. Many people posted responses to all four of the questions, while others selected to respond to one or two. In all, the four discussion topics were viewed 1777 times during the 15 days they were open for comment. The question "Do you think that Parliament should legislate to allow the Regulatory Authority to take all decisions about licensing research into inter-species embryos?" received the greatest number of comments (42) and was viewed the most number of times (566).

Analysis of responses to the four questions:

Q1: "Who do you think should take decisions about the use of embryos in fertility treatment—Parliament, the Regulatory Authority, or individual doctors in consultation with their patients?"

4. A total of 39 comments were posted in response to this question. The discussion topic was viewed 390 times.

5. Fifteen people (38%) considered that Parliament should take decisions about the use of embryos in fertility treatment. Of these, twelve strongly opposed the destruction of embryos altogether, but considered that if any body should be responsible it ought to be Parliament: "Research like this is unethical and so I don't believe anyone should be taking these decisions. Certainly though, out of the options given, Parliament should be the first".[156]

6. Of those who explained their preference for Parliament, two considered that, given the issue's ethical dimension, only an elected and democratically accountable body ought to take such decisions. One contributor suggested that this issue should be decided "in the public eye" and "accurately reflect the will of the people at each instance, not the will of one or the few".[157] One person proposed that if the Government legislates on this issue, "let's make it as hard as possible and require a full debate in Parliament every time!"[158] Three others supported this view by quoting it as their contribution to the topic comment thread.

7. Two people (5%) expressed support for doctors and patients together taking decisions about the use of embryos in fertility treatment, albeit with the use of external regulation or advice when required. Of these, one considered that the parents/mother and their/ her medical adviser(s) were "far more familiar with their personal circumstances than any legislator or quango could be and stand to be far more affected by the outcome". External regulation should be required only where "there is serious possibility of harm to the resulting child or to any third party" (not including harm to the embryo).[159] Another suggested that "guidance derived centrally" could be used by doctors and their patients.[160]

8. Four comments (10%) advocated a tiered approach, involving a combination of Parliament, the Regulatory Authority and doctors and patients. Of these, three proposed that Parliament should decide the principles on which decisions are based and enshrine them in law. The Regulatory Authority would have the power to take decisions. Complex cases could be referred by doctors to the Regulatory Authority for consideration, which could then be referred to a Parliament/Government committee for a decision.[161]One person suggested that Parliament should set a broad framework for decision-making, including protection for viable embryos, and the rest should be determined by patients and doctors; and in addition proposed that the HFEA be abolished or over-hauled to adopt a more patient and embryo-friendly approach.[162]

9. Four contributors (10%) specifically objected to doctors being given responsibility for taking decisions on the use of embryos in fertility treatment. One contributor said that as a medical doctor himself, he did "not want to shoulder this responsibility".[163] Others suggested that individual doctors have "no more expertise in moral decision making than anyone else", and that the "wider implications of these decisions are too big to be left to parents and doctors with vested interests".[164]

10. No contributors advocated that the Regulatory Authority alone should be responsible for taking decisions on this issue. Five people specifically objected to this idea (13%). Their reasons for doing so included the suggestion that the Regulator is not sufficiently accountable and that an unelected body should never take such decisions.[165] A medical doctor expressed "grave concerns" about the people appointed to bodies such as the HFEA and did not want them to have more power.[166]

11. One contributor proposed that a referendum be called to allow the public to decide on the issue.[167]

12. Ten comments (26%) on this topic objected altogether to the premise that embryos be destroyed to aid fertility treatment. They therefore did not address who should take decisions about its use.

Q2: "Do you think that sex selection of embryos should be allowed for family balancing purposes?"

13. A total of 40 comments were posted in response to this question. The discussion was viewed 520 times.

14. 39 of the 40 contributors (98%) agreed that there should remain a prohibition on the selection of embryos for a particular sex for family balancing purposes.

15. Only one contributor (2%) did not state outright opposition to the idea, suggesting that the "onus rests on those of us who would ban others to demonstrate some real harm that would result from their choices". He/she proposed that most people in the UK would have no interest in determining the sex of their children and that an outright ban at this stage would be disproportionate to any credible prospect of population distortion. If this did result, remedial action could then be taken to limit sex selection. While she/he expressed "personal distaste for such choices… I am far from convinced that I have any right to deny them to other people".[168]

16. Of those who considered that the ban should remain, nine (23%) objected to sex selection on the grounds of sex discrimination:

"discrimination of one sex over another should be as illegal in family balancing as it is in employment law".[169]

"sex selection is a euphemism for boy selection."[170]

17. Eight people (20%) considered that sex selection could lead to a population imbalance. Several made reference to sex selection practices in India and China, which they considered had led to a "disastrous"[171] and "devastating"[172] population imbalance in favour of male children. One person questioned what was meant by 'family balancing': "what is unbalanced about having all boys or all girls?"[173]

18. Seven people (18%) objected to sex selection on the basis that killing any embryo is fundamentally wrong. An additional seven also objected on the grounds that every child's life is worthwhile. Two people (5%) raised objections that to allow sex selection for family balancing purposes was to treat children as "commodities", to be selected or disregarded for the parents' convenience and that this would not be in the best interests of the child.[174] Two people considered sex selection to be against God's will.

19. Three contributors (8%) raised concerns that the introduction of sex selection could be the "thin end of the wedge", which may lead to the creation of "designer babies", selection on the basis of hair or eye colour, and going down the "route of eugenics".[175] Another noted that there "are far too many unforeseeable dangers in allowing sex selection", including for instance increasing the numbers of certain sex-linked congenital abnormalities.[176] Two people (5%) expressed opposition to the practice as a whole and considered sex selection on the basis of family balancing to be a particularly "trivial" purpose.[177]

Q3: "Do you think that Parliament should legislate to allow the Regulatory Authority to take all decisions about licensing research into inter-species embryos?"

20. This question received the highest number of comments and views. A total of 42 comments were posted and the topic was viewed 566 times.

21. The Chairman's introduction to the topic explained the Government's change in position to allow certain inter-species entities to be created for research purposes under licence by the Regulatory Authority, within the existing 14 day limit. He asked for views about whether people supported the Science and Technology Committee in recommending that Parliament should legislate to allow the Regulatory Authority to take all decision about licensing research into inter-species embryos.

22. Only one person (2%) proposed that the Regulatory Authority should license the research of inter-species embryos, suggesting that "it is much better that such research is governed by a Regulator than by a series of 'sticking plaster' legislation which may either impede proper necessary and beneficial research or allow loopholes and therefore potentially rogue experiments". The contributor considered the UK to have responsibly regulated human embryo research, compared for instance to the US, and that UK regulation under legislative control works well and responsibly.[178]

23. One contributor, though expressing objections to the idea of inter-species hybridisation, proposed a role both for Parliament and the Regulatory Authority. He suggested that Parliament legislate to prevent the creation of human embryos for any purpose other than creating a human life. The Regulatory Authority could take decisions about the creation of "other" embryos and hybrids and a representative and advisory group be appointed to ensure public accountability.[179]

24. 12 people (29%) specifically objected to the idea that the Regulatory Authority be responsible for licensing inter-species embryos. The principal objections were the Regulator's perceived lack of accountability and/or objectivity:

"It is difficult to escape the idea that the regulator will in some form contain persons from, or directly related to, interested parties, be they scientists, particular laboratories, or commercial entities."[180]

"Scientists cannot self-regulate; they are too close to the subject to take a balanced view".[181]

"The regulatory bodies have not proved themselves to be independent and this sort of authority cannot be passed to an unelected, unrepresentative body."[182]

25. A researcher in embryology wrote that the regulation of research is extremely burdensome to researchers and slows progress dramatically. The submission considered that the Regulatory Authority should not have the right to regulate on all aspects of interspecies embryo research. He/she advocated that total or partial hybrids and chimeras be banned by Parliament to ease the burden of regulation. The local research ethics committee (LREC) system could have a greater role and the Regulatory role be reduced to a legal oversight/LREC advisory function.[183]

26. Three contributors (7%) considered that Parliament should have a direct role in making decisions in this area, without delegating to the Regulatory Authority. Their reasons included the need for accountability through an elected decision-making body and the wish that Parliament retain control of the Regulatory Authority to ensure that all decisions are ethical.[184]

27. Four people (10%) considered that Parliament's role should be to legislate against the creation of hybrid embryos altogether.[185]

28. A total of 38 of the 42 comments (90%) raised objections to the creation of hybrid embryos altogether. Several did so on the basis of religious, ethical or moral convictions, regarding it as "contrary to human dignity"[186], "wrong and unethical" to use human embryos as a "means to an end"[187], or attempting to "play God"[188].

29. Two suggested that creating human/animal hybrids went against the Warnock Review principle that the human embryo should be afforded special status.[189] Eight contributors considered the creation of hybrid embryos unnecessary for research purposes:

"why is hybridisation necessary for research when there is evidence now that an ethical source of stem cells, adult stem cells, have been utilised successfully in treatments?"[190]

"Animal/human hybrid embryos are alleged to be needed to conduct embryonic stem cell research but adult stem cell research has far greater potential to create useful therapies and is ethically sound."[191]

30. A research scientist considered it "disingenuous to imply that hybrid embryos are required or even desirable for stem cell research. Adult cells have proved much more versatile experimentally".[192]

31. One contributor suggested that changes were being rushed through "with great haste and virtually no public awareness" and considered that such important issues should have been fully and publicly debated.[193]

Q4: "Who do you think should take decisions about the use of embryos in research—Parliament, the Regulatory Authority, or research scientists?"

32. A total of 32 comments were posted in response to this question. It was viewed 301 times.

33. Twenty people (62%) considered that Parliament should take decisions about the use of embryos in research. Seven of these added that Parliament's decision should be to ban outright such research. Contributors described Parliament to be the most appropriate body because it is elected, accountable and impartial, "responsible to the nation" and decisions in this area ought to "accurately reflect the will of the people at each instance".[194]

34. Two people (6%) regarded the Regulatory Authority as best placed to take decisions about the use of embryos in research, one because it is "more sensible and practicable for the Regulatory Authority to decide licenses on a case-by-case basis".[195] However, six people (19%) specifically objected to this proposal, variously describing the Regulatory Authority as not sufficiently open to scrutiny, not "truly competent" and already possessing a fixed view on the intended outcome.[196]

35. No-one advocated that scientists should take decisions about using embryos in research. Seven people (22%) opposed this idea. Their objections were wide-ranging and included views that:

the decision about whether to use embryos in research should be made separately from those who would carry out the work;
scientific researchers would follow their own agenda;
given the pressure scientists are under to produce results the wish to undertake novel research may compromise ethical decisions;
scientists cannot self-regulate.[197]

36. Two people (6%) proposed holding a referendum on the issue. Two others supported a tiered approach, whereby Parliament establishes the principles in a legislative framework and the Regulatory Authority has the power to take the decisions. If a new situation arose, it could be referred back to Parliament.[198]

37. Five people (16%) had no preference about who made the decision because they disagreed with research on embryos altogether.

156 Cm123, 22 June Back

157 Lithgo, 22 June; Pierrekirk, 23 June Back

158 james2007, 20 June Back

159 CGavaghan, 25 June Back

160 Maoldhomhnaigh, 25 June Back

161 Mattws1, 23 June; amw67, 25 June; Back

162 Tony35, 26 June Back

163 Sam51, 26 June Back

164 John, 21 June; eh, 21 June Back

165 gsmith, 20 June; ski1966, 21 June; fhs, 26 June Back

166 Sam51, 26 June Back