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. 2004 Jul 31;329(7460):288-9.
doi: 10.1136/bmj.329.7460.288.

Ethical review of research into rare genetic disorders

M Parker  1 , R Ashcroft, A O M Wilkie, A Kent
Affiliations

Ethical review of research into rare genetic disorders

M Parker et al. BMJ. .

Abstract

Although some work on rare diseases is clearly clinical investigation and some clearly research, much activity falls uneasily between the two. Where should we draw the line and how can we ensure research gets appropriate ethical review?

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Figures

Figure 1
Figure 1
Genetic research can be like an “informed fishing trip” Credit: MICHIGAN TOURIST OFFICE
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Comment in

References

    1. Department of Health. Research governance framework for health and social care. London: DoH, 2003:para 1.9. www.dh.gov.uk/assetRoot/04/01/47/57/04014757.pdf (accessed 5 Apr 2004).
    1. General Medical Council. Confidentiality: protecting and providing information. London: GMC, 2000.
    1. Department of Health. Good practice in consent implementation guide: consent to examination or treatment. www.dh.gov.uk/assetRoot/04/01/90/61/04019061.pdf (accessed 13 Jul 2004).
    1. Genetic Interest Group. Minutes for research approval and rare genetic disorders workshop, 30 April 2003. www.gig.org.uk/docs/researchapproval2.pdf (accessed 13 Jul 2004).

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