The Centre for Bionetworking and the Department of Anthropology at the University of Sussex co-organised the international Sigenet Workshop on Genetics and Race in Kunming from 3 to 5 April with Chinese and German partners. The workshop was the first of its kind in China. The interdisciplinary event, consisting of experts in genetics, molecular biology, anthropology, sociology, law, philosophy, and medicine, aimed to address ethical and social concerns related to the sampling, banking and research of Human DNA of vulnerable ethnic and minority groups, such as people with disabilities.
Host of the workshop, Jiayou Chu from Peking Union Medical College (Kunming) heads the world’s largest ethnic DNA bank, housing the immortalised cells of China’s ethnic groups and subgroups. Co-organiser Huanming (Henry) Yang, co-founder of Beijing Genomics Institute (BGI), the world’s largest DNA sequencing company, suggested the theme of the workshop, as he attaches great value to discussion of the ethical consequences of life science in society.
BGI is initiator of daring research projects, including a genome project aimed at finding a genetic test that can predict a person’s inherited cognitive ability. It is also an innovating force of non-invasive predictive testing in China and in Europe, introducing Noninvasive Fetal Trisomy (NIFTY) to costumers via hospitals. Using advanced forms of parallel sequencing, the tests are used to detect Trisomy 21 (Down’s Syndrome) and other fetal abnormalities, and in principle could screen the entire genome of the unborn child.
The workshop identified a number of issues in great need of public discussion. A main issue concerned the relation between the genetic characterisation of genetic group samples and the categorisation of ethnic minorities, which have led to debate about genetic discrimination in many countries. The experts discussed how scientists could take responsibility by actively correcting misinterpretations of their work.
Another main issue concerned the indirect discrimination occurring with the ability to test a foetus for a whole range of traits undesirable in society. The workshop urged reflection about the norms and values that underpin a resolution to give birth to ‘high quality children’, lest they threaten to devalue the lives of members of society.
Further discussion was held on the feasibility of selecting embryos for traits, such as intelligence, while at the same time attracting attention to the increasing demand for technology to facilitate the birth planning of ideal offspring. This discussion is to be continued at other international forums.