Response to Nuffield Council on Bioethics Consultation on Human Bodies in Medicine and Research

13 July 2010

This policy document is a response submitted by the Progress Educational Trust (PET) to the Nuffield Council on Bioethics' Consultation on Human Bodies in Medicine and Research.

PET is grateful to Dr Karen Devine and Anoushka Shepherd for their contribution to this document.

Those who responded to the consultation were asked the questions listed below. Questions in bold can be clicked on to take you to PET's response. Where questions are not in bold, PET declined to express a view.

1. Are there any additional types of human bodily material that could raise ethical concerns?

2. Should any particular type(s) of human bodily material be singled out as 'special' in some way?

3. Are there significant differences between providing human bodily material during life and after death?

4. What do you consider the costs, risks or benefits (to the individual concerned, their relatives or others close to them) of providing bodily material?

5. What do you consider the costs, risks or benefits (to the individual concerned, their relatives, or others close to them) of participating in a first-in-human clinical trial?

6. Are there any additional purposes for which human bodily material may be provided that raise ethical concerns for the person providing the material?

7. Would you be willing to provide bodily material for some purposes but not for others? How would you prioritise purposes?

8. Would your willingness to participate in a first-in-human trial be affected by the purpose of the medicine being tested? How would you prioritise purposes?

9. Are there any other values you think should be taken into consideration?

10. How should these values be prioritised, or balanced against each other? Is there one value that should always take precedence over the others?

11. Do you think that it is in any way better, morally speaking, to provide human bodily material or volunteer for a first-in-human trial for free, rather than for some form of compensation? Does the type or purpose of bodily material or medicine being tested make a difference?

12. Can there be a moral duty to provide human bodily material, either during life or after death? If so, could you give examples of when such a duty might arise?

13. Can there be a moral duty to participate in first-in-human trials? If so, could you give examples of when such a duty might arise?

14. Is it right always to try to meet demand? Are some 'needs' or 'demands' more pressing than others?

15. Should different forms of incentive, compensation or recognition be used to encourage people to provide different forms of bodily material or to participate in a first-in-human trial?

16. Are there forms of incentive that are unethical in themselves, even if they are effective? Does it make any difference if the incentive is offered by family or friends, rather than on an 'official' basis?

17. Is there any kind of incentive that would make you less likely to agree to provide material or participate in a trial? Why?

18. Is there a difference between indirect compensation (such as free treatment or funeral expenses) and direct financial compensation?

19. Is there a difference between compensation for economic losses (such as travelling expenses and actual lost earnings) and compensation/payment for other factors such as time, discomfort or inconvenience?

20. Are you aware of any developments (scientific or policy) which may replace or significantly reduce the current demand for any particular form of bodily material or for first-in-human volunteers? How effective do you think they will be?

21. In your opinion are there any forms of encouragement or incentive to provide bodily material or participate in first-in-human research that could invalidate a person's consent?

22. How can coercion within the family be distinguished from the voluntary acceptance of some form of duty to help another family member?

23. Are there circumstances in which it is ethically acceptable to use human bodily material for additional purposes for which explicit consent was not given?

24. Is there a difference between making a decision on behalf of yourself and making a decision on behalf of somebody else: for example for your child, or for an adult who lacks the capacity to make the decision for themselves?

25. a) What part should family members play in deciding whether bodily material may be used after death where the deceased person's wishes are known? Should family members have any right of veto?

    b) What part should family members play in deciding whether bodily material may be used after death where the deceased person's wishes are unknown? Should family members have any right of veto?

26. To whom, if anyone, should a dead body or its parts belong?

27. Should the laws in the UK permit a person to sell their bodily material for all or any purposes?

28. Should companies who benefit commercially from others' willingness to donate human bodily material or volunteer in a trial share the proceeds of those gains in any way? If so, how?

29. What degree of control should a person providing bodily material (either during life or after death) have over its future use?

30. Are there any other issues, connected with our terms of reference, that you would like to draw to our attention?