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DATABASESThe following terms in this article are linked online to: OMIM: http://www.ncbi.nlm.nih.gov/Omim/
Alzheimer disease | hypothyroidism | phenylketonuria | schizophrenia
FURTHER INFORMATION1997 European Convention on Human Rights and Biomedicine:http://conventions.coe.int/treaty/en/treaties/html/164.htm 1997 UNESCO Universal Declaration:http://www.unesco.org/opi/29gencon/egenkit.htmA list of Health Care Ethics Institutions and Organizations: http://www.ethics.ubc.ca/resources/biomed/eth-inst.html American Society of Human Genetics:http://www.faseb.org/genetics/ashg/ashgmenu.htm
CIOMS: http://www.who.int/ina-ngo/ngo/ngo011.htm Code of Nuremberg: http://www.ushmm.org/ research/doctors/Nuremberg_Code.htmCouncil of Europe: http://www.coe.int/portalT.asp Declaration of Helsinki: http://www.wma.net/e/policy/17c. European Society of Human Genetics:http://www.eshg.org/
HumGen: http://www.humgen.umontreal.caMedical Research Council: http://www.mrc.ac.uk/ Nuffield Council on Bioethics:http://www.nuffieldbioethics.org/home/index.asp/pdfUNESCO: http://www.unesco.org/
World Health Organization:http://www.who.int/home-page/
World Medical Association:http://www.wma.net/e/home.htmlAccess to this interactive links box is free online.
within and build on, rather than oppose, such social conventions6,7.
In 1994 and 1996, the World Health Organizations Regional Office for the Eastern Mediterranean (which covers North Africa and the Middle East, including Pakistan) convened two meetings of experts in medical and social sciences to review the place of genetics in medical services in the region8. The participants agreed that consanguineous marriage is an integral part of cultural and social life in many areas, and that attempts to discourage it at the population level are inappropriate and undesirable, even though it is associated with an increased birth prevalence of children with recessive disorders. Instead, they recommended an approach that identifies families at increased risk and provides them with genetic counselling. They pointed out that this approach can be unusually effective in populations that favour consanguineous marriage9, and concluded that the development of genetics services is a particularly high priority for such communities. Discussions in the United Kingdom have reached similar conclusions10, and the approach has been further developed at a recent multidisciplinary meeting (B.M. and A.D., unpublished observations). This article summarizes the background to these discussions and the recommendations arising from them.
Customary consanguineous marriage
The reasons that people give for preferring consanguineous marriage include: strengthening of family ties; relative ease for both men and women in finding a suitable partner; support for the womans status, as well as better relationships with her in-laws1,1113;
and care for people in old age. Also, in practice, consanguineous marriages are more stable than marriages between unrelated partners1,12. An anthropological perspective on kinship patterns can help in understanding these observations13,14.
Genetic counselling and customary consanguineous marriage
Bernadette Modell and Aamra Darr
Consanguineous marriage is customary in...