EURORDIS condemns the use of genetic testing to establish ‘ethnic purity’July 2012
EURORDIS condemns the use of genetic testing to establish racial origins for political purposes and deems it unacceptable. The condemnation echoes the press release issued by the European Society of Human Genetics after a member of parliament from the Hungarian far-right Jobbik party used a genetic test to attempt to prove he did not have a Roma or Jewish ethnic background.
“This sad case happening in Hungary today could happen in any other European country. Collectively, patients and families as well as all stakeholders, and more broadly all policy makers and indeed all citizens, we need to raise our level of vigilance so to prevent any potential genetic discrimination of all sorts and avoid misuse of scientific advancements intended to improve patients care” says Yann Le Cam, Chief Executive Officer of EURORDIS.
“This is appalling. EURORDIS, in consultation with HUFERDIS, the Hungarian Rare Disease Alliance, strongly endorses ESHG’s position” declares Terkel Andersen, President of EURORDIS.
“This is totally unacceptable exploitation of biological materials which represent useful information for patients,” argues Flaminia Macchia, EU Public Affairs Director at EURORDIS.
Genetic testing is of particular importance to the rare disease community since it can be used to establish early diagnosis and prevention, timely treatment, as well as to give genetic counselling to the patient and the family at large and to raise awareness amongst couples in age to procreate.
Journal “Nature”: “Hungary’s Medical Research Council (ETT), which advises the government on health policy, has asked public prosecutors to investigate a genetic-diagnostic company that certified that a member of parliament did not have Roma or Jewish heritage.” http://www.nature.com/news/genome-test-slammed-for-assessing-racial-purity-1.10809