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Rapid Responses: Rapid Responses published:
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The human tissue bill.
- Dr.Naseem A. Qureshi MD, IMAPA, LMIPS (27 June 2004)
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New bills should clarify rules for 'altruistic' genetic testing
- Ainsley J. Newson (2 July 2004)
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Dr.Naseem A. Qureshi MD, IMAPA, LMIPS, Locum Psychiatrist Prince Sultan Bin Abdulaziz City for Humanitarian Services, Riyadh
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Sir: This modified human tissue bill is more comprehensive than the previous draft and obviously the informed consent of mentally sound patients for removing their body tissue for research purpose is one the key cmponents of this bill. However, in case of mentally incapacitated patients, the key relative can give the consent for the same purpose. I have one reservation that this bill should make very clear by documenting that human tissue will not be used for commercial purposes even if that lead to therapeutic research. Reference: Kathleen Liddell, David K Menon, and Ron Zimmern.The human tissue bill and the mental capacity bill. BMJ 2004; 328: 1510-1511 Competing interests: None declared |
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Ainsley J. Newson, Post Doctoral Associate in Clinical Ethics and Genetics Medical Ethics Unit, Imperial College London & London IDEAS Genetics Knowledge Park; London W6 8RP
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Sir, Liddell et al rightly point out potential problems with the Human Tissue Bill and Mental Capacity Bill as they apply to genetic testing in adults who lack the capacity to consent(1). One application of genetic testing the authors refer to, often used by clinical genetics services, requires further inquiry and clarification: testing a genetic sample obtained from an incapacitated adult solely to benefit another family member. This kind of test is usually performed to identify a mutation or enable linkage testing and the person tested is unlikely to gain any therapeutic benefit. This ‘altruistic’ testing is likely to be covered under the Human Tissue Bill(2), provided the Secretary of State specifies those circumstances deemed to be in the incapacitated adult’s best interests(3). Yet if, as speculated, the Mental Capacity Bill eventually overrides the Human Tissue Bill on this issue, problems for altruistic genetic testing could arise. In the Mental Capacity Bill’s current form, the definitions of ‘best interests’ and ‘treatment’ provide little clarification as to which interests might justify an intervention; and altruistic genetic testing is unlikely to satisfy the bill’s requirements for ‘research’(4). It would be wise to defer to the Law Commission’s earlier recommendation that this testing should not be solely structured around ‘best interests’(5). Indeed, a consideration of ‘familial well-being’ may be more appropriate and reflective of the common law. It is important not to deny incapacitated adults the opportunity to assist another family member. However, it is also important to ensure potential ethical issues are identified in advance and debated before regulations are created. For example, it will be important to ensure that incapacitated adults are protected from being exploited by relatives with overtly contrary interests. The drafting of these two bills provides an ideal time to undertake consultation and deliberation on this important issue. Careful analysis, informed by case studies, is needed to prevent significant injustices arising. References 1.Kathleen Liddell, David K Menon, and Ron Zimmern.The human tissue bill and the mental capacity bill. BMJ 2004; 328: 1510-1511. 2. Human Tissue Bill. Clause 6. 3. House of Lords. Explanatory Notes: Human Tissue Bill. Available at: http://www.publications.parliament.uk/pa/ld200304/ldbills/094/en/04094x-- .htm (accessed 3 July 2004); at [22]. 4. Mental Capacity Bill. Clauses 4, 30-33 and 60. 5. Law Commission (1995), Mental Incapacity. Report No. 231; at [6.25]. Competing interests: None declared |
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