Special Symposium 8th WBC: Predictive Genetic Testing in Asia: social-science perspectives on the bioethics of choice

Organiser: Margaret Sleeboom-Faulkner

A special Symposium on ‘Predictive Genetic Testing in Asia: social-science perspectives on the ramification of choice' at the 8th World Congress on Bioethics (8th WCB) in Beijing.

he aim is to stimulate discussion on the predictive testing and the various circumstances in which people perceive the choices they have with regards to pre-symptomatic testing in Asia. We use a comparative approach in order to understand the social-cultural, economic and political context in which predictive testing takes place (See outline of the theme of the symposium below).

The symposium will convene at the 8th WCB, which will take place from 7-9 August 2006 in Beijing. A total of 12 papers will be presented. All paper proposals received before 11 February 2006 will be considered for selection. The publication of the results of the panel discussion on this topic is under negotiation. All papers are due at the organizer on 15 July 2006 and will be circulated before August. Formal paper presentations are limited to 20 minutes, allowing maximum scope for drawing out comparisons between countries, regions and the contexts of predictive testing.

Pending on funding conditions, financial arrangements are made for participants through the International Institute of Asian Studies. We hope to cover the following expenses: 
- (economy) transport to and from Beijing;
- registration fee.

Paper proposals should not exceed 1,000 words. Together with a short resumé, it should be e-mailed to the organiser of the panel (Margaret Sleeboom-Faulkner) at the following e-mail address: m.sleeboom@wanadoo.nl

Further information can also be obtained from the organiser.

Summary Special Symposium: Predictive Genetic Testing in Asia: social-science perspectives on the ramification of choice

The development of new reproductive and genetic technologies (NGTs) have made possible predictive testing for a range of monogenetic disorders, such as Down's syndrome and Huntington's Disease. NGTs in future will also provide genetic information to large human groups for a variety of multifactorial genetic disorders. This information, however, will have a much higher margin of uncertainty. Susceptibility screening (e.g. for cancer, cardiovascular diseases, and neuropsychiatric diseases) will require analysis of multiple genes as well as environmental factors, such as life style and living conditions. A high margin of uncertainty shall remain problematic to potentially ‘pre-symptomatic' groups of people, and may lead to anxieties and difficulties regarding the long-term decisions people make in life.

Especially when no cures or therapies are available, when people do not have the financial means to pay for healthcare, or when the financial and social consequences of a positive test outcome are an overwhelming burden, even the decision to take a test may be a dramatic one. Whereas some regard a genetic test as a possibility of a disease-free life or as a ‘certainty' of knowing what will come, other regard the opportunity of a test as gambling with the meaning of life. In the case of a late-onset disorder such as HD, for which there is no cure, a foretold disease can annihilate the meaning of life itself. In the case of prenatal testing, testing may lead to difficult decisions to be made about the abortion of the foetus.

The ways in which people deal with such ‘choices' can only be understood in the light of the experience people have with disease and their ways of dealing with them. I shall refer to this as the ramifications of choice. I am not thinking here about the various traditional modes of medicine used to understand and cure disease, but about the material, social and personal possibilities available to people and the ways in which they perceive them. For instance, in a country that generally allows only one child per family and in a county where birth is encouraged, the ramifications of choice are likely to differ. Predictive testing, then, requires taking into account different considerations and ‘counsel' from genetic counsellors, physicians, family and community.

Different cultural, economic and political conditions lead to different testing practices and ramifications of choice. Asian countries harbour great variety regarding population policies, family organisation, gender distinctions, views on the embryo/life, medical health provision and access, and regulatory policies in the field of reproductive medicine and biochemistry.

The ramifications of choice are couched in terms of cultural categories at the same time as they are conditioned by culture. For instance, various cultural/religious ways may be used to encourage or discourage prospective parents to have abortion. E.g., depending on the environment and circumstances, questions that physicians and nurses ask could culturally condition a pregnant woman's choice: Don't you want the best for your child?; Do you want to become a burden to society?; Do you believe God would want you to respect the life you are carrying? To understand how such cultural factors are related to choice, we need to understand the meaning and implications of the use of cultural categories of ‘abnormality'. Furthermore, we need to know how these cultural/religious categories relate to other ‘hidden' personal motivations for choosing a test. 
Crucial to the ramifications of choice, we need insight into how these motivations are related to the material/social circumstances in which people think about the possible outcomes of predictive genetic tests? How does the unfolding of a foretold disorder affect the life, work and ambitions of individuals and families in Asian cultures? How does it affect family relations? What sense do people make of the probable futures revealed by genetic tests? What choices do prospective parents have in the light of their perception of the anticipated outcome of the prediction?

This special symposium aims to acquire comparative insights into the various ramifications of choice in various Asian countries from a social-science point of view. The following are key issues: 
- How much is choice regarding predictive genetic testing in Asia shaped by financial, legal, cultural, social and political factors? What are the possibilities/necessities opened up by the availability of predictive testing?
- How are personal choices related to population policies, healthcare access and birth-regulation?
- How do people experience predictive genetic testing in Asian countries in terms of choice? How do these involve views of the self, family, work, community, and future expectations?