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The First South American Workshop on Genomics and Community Genetics 2005

Genetics and Population Health 2004

Community Genetics in Asia 2004

Bangalore 2002

  • Workshop

Leeds 2000

Second International Workshop on Consanguinity, Endogamy and Cultural Diversity

13 - 15 January 2002

'Indian Institute of Science, Bangalore, India

Local Organizers
Prof. N. Appaji Rao, Prof. H.S. Chandra, Prof. H.S. Savithri, Prof. M.R.S. and Dr. N.K. Ganguly

International Organizing Committee
Prof. A.H Bittles, Dr. R. Hussain, Prof. R. Mueller,Dr. A. Darr, Mrs. G. Karbani, Prof. M.A. Patton,'''''Prof. J.H. Edwards, Prof. B. Modell, Dr. A.K. Saggar-Malik
Sponsored by
The Indian Council for Medical Research and
The World Health Organization
Supported by
International Union of Biological Sciences
Council for Scientific and Industrial Research, India
Department of Biotechnology, India
Indian Institute of Science
Jawaharlal Nehru Centre, India
Sir Dorajbi Tata Trust, India
Edith Cowan University, Australia
The Birth Defects Foundation, U.K.
The Wellcome Trust, U.K.
Morrison Institute for Population and Resource Studies,
Stanford University, U.S.A.

Invited participants
Dr. A. Anand, Bangalore, India
Prof. N. Appaji Rao, Bangalore, India
Prof. A.H. Bittles, Perth, Australia
Dr. P. Corry, Bradford, U.K.
Dr. E. Edkins, Australia
Prof. J.H. Edwards, Oxford, U.K.
Prof. D.D. Farhud, Tehran, Iran
Dr. R. Hussain, Armidale, Australia
Mrs. G. Karbani, Leeds, U.K.
Dr. P. Mehta, London, U.K.
Dr. J. Pedersen, Oslo, Norway
Ms. K.E. Port, Perth, Australia
Dr. A. Radha Rama Devi, Hyderabad, India
Dr. B. Mohan Reddy, Kolkotta, India
Dr. A.K. Saggar-Malik, London, U.K.
Prof. H.S. Savithri, Bangalore, India
Ms. S.G..Sullivan, Perth, Australia
Dr. H.S. Venkatesha Murthy, Bhadravati, India

Progamme \|Chairs A. Bittles and J.H. Edwards
SUNDAY 13 January 2002
2.30 - 5.00 pm I. Endogamy, consanguinity and genetic disorders
Moderators A.H. Bittles and A. Darr
2.30 pm: Topic 1

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.
3.30 - 4.00 pm Refreshments
4.00 pm Topic 2

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.
MONDAY 14 January 2001
9.00 - 3.00 pm Endogamy, consanguinity and genetic disorders
Moderators R. Hussain
9.00 am Topic 3

The effects of consanguinity on perinatal health in Developing Countries, to include data collection on commonly reported inherited disorders in different populations.
Topic 4

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.
10.30 - 11.00 am Refreshments
Moderators A. Radha Rama Devi and A. Saggar-Malik
11.00 amTopic 5

An assessment of the specialist medical staff and diagnostic facilities available to patients with inherited disorders at local, regional and national levels.
12.00 pm Topic 6

Assessment of the types of epidemiological data that should be routinely collected in different countries, e.g. membership of specific sub-communities. :
1.00 - 2.00 pm Lunch
2.00 -3.00 pm Session round-up discussion
Chairs   R. Hussain and J. Pedersen
3.00 - 3.30 pm Refreshments
4.00 - 5.30 pm Screening and counselling in endogamous/consanguineous communities
Moderators E. Edkins and D.D. Farhud
4.00 pm Topic 1

Recommendations on the forms of additional testing warranted in consanguineous pregnancies.
Topic 2

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.
TUESDAY 14 January 2002
9.00 - 5.00 pm Screening and counselling in endogamous/consanguineous communities
Moderators P. Corry and P. Mehta
9.00 am'Topic 3

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.
 Topic 4

Recommendations on the education and training needs of health professionals:
i) Clinical geneticists;
iii)General practitioners;
iv)Midwives/Nurse specialists.

11.00 -11.30 am Refreshments
Moderators G. Karbani
11.30 amTopic 5
Recommendations on recruitment and the development of appropriate training programmes for Community Genetic Counsellors.
Topic 6

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.
1.00 - 2.00 pm Lunch
2.00 - 3.30 pm Session round-up discussion
Chairs H.S. Savithri and H.S. Venkatesha Murthy
3.30 - 4.00 pm Refreshments
4.00 - 5.00 pm Final discussion
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