Evaluation of data on the prevalence, types and time-trends of endogamous and consanguineous marriage in Asia and Africa, and predictions as to future rates in different societies.

Community perceptions and beliefs on consanguineous marriage. To include the role of the media, especially the vernacular press, in promoting knowledge/(mis)undertanding of the topic.

The effects of consanguinity on perinatal health in Developing Countries, to include data collection on commonly reported inherited disorders in different populations.

An overview of the roles of primary health care providers in different countries, with consideration of the availability/provision of simple screening procedures for genetically determined disorders at community level, e.g. vision, hearing.

An assessment of the specialist medical staff and diagnostic facilities available to patients with inherited disorders at local, regional and national levels.

Assessment of the types of epidemiological data that should be routinely collected in different countries, e.g. membership of specific sub-communities. :

Recommendations on the forms of additional testing warranted in consanguineous pregnancies.

An assessment of the principles and practice of genetic counselling, e.g. the background and training of the counsellor, and whether counselling is or should be directive/non-directive.

Recommendations on the information and counselling advice that should be provided to couples:

i)Who wish to marry a relative or who already are married to a relative.

ii)Who have a child with a recessively inherited disorder, or a syndromic condition that is unique to their family/community.

In a large majority of cases it is expected that the referral will follow the birth of an affected child, and in many communities other family members may expect to be closely involved in the information and counselling process.

Recommendations on the education and training needs of health professionals:

i) Clinical geneticists;

ii)Obstetricians;

iii)General practitioners;

iv)Midwives/Nurse specialists.

 

Recommendations on recruitment and the development of appropriate training programmes for Community Genetic Counsellors.

Consideration of the role of State and National Government Agencies in the planning and provision of community-based educational programmes on genetic disease. To include assistance from international agencies and the provision of Web-based information in local and national languages.