24 June 2012

Genetic Profiling

'Genome test slammed for assessing 'racial purity'' by Alison Abbott in Nature 486(7402) (14 June 2012) 167 notes that Hungary’s Medical Research Council (ETT) has asked public prosecutors to investigate a genetic-diagnostic company that certified that a parliamentarian from the far-right Jobbik party (which won 17% of the votes in the 2010 general election) did not have Roma or Jewish heritage.

The MP reportedly requested a certificate from Nagy Gén Diagnostic & Research (which rents office space at Budapest's Eötvös Loránd University).

Nagy Gén supposedly scanned 18 positions in the MP’s genome for variants that it claims are characteristic of Roma and Jewish ethnic groups, concluding that Roma and Jewish ancestry can be ruled out.  Nature reports that the certificate adds "For an interpretation of the test result and for genetic consultation relating to the family-tree research, please contact us as soon as convenient".

The ETT characterised the certificate as “professionally wrong, ethically unacceptable - and illegal”, on the basis that the testing violates Hungary's 2008 Law on Genetics that apparently allows genetic testing only for health purposes. We might add that scientifically the test is absurd.

Nature quotes a spokesperson from Human Rights Watch as commenting -
The council’s stand is important. [In Hungary] there have been many violent crimes against Roma and acts of anti-Semitism in the past few years. Politicians who try to use genetic tests to prove they are ‘pure’ Hungarian fan the flames of racial hatred.
Nagy Gén is reported as contesting the claims, arguing that it - quelle surprise - “rejects all forms of discrimination, so it has no right to judge the purpose for which an individual will use his or her test result, and so for ethical reasons it could not have refused to carry out the test”.

Nature unfortunately does not discuss the potential for internet-based direct-to-consumer and cross-border ethnic profiling, likely to be attractive in jurisdictions such as Japan rather than merely in the more atavistic parts of Eastern Europe.

In Australia the provision of such tests would arguably not breach national anti-discrimination law (although conceivably subject to action regarding fraud), in contrast to use of the information to sort applicants for employment or other profiling. Australian concerns regarding genetic discrimination have centred on disability, as highlighted in the 2003 ALRC Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC Report 96).

It would be interesting to see an update of work such as 'Genetic Discrimination in Australia' by Barlow-Stewart and Keays in 8 Journal of Law and Medicine (2001) 250, 'Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients' by Taylor, Treloar, Barlow-Stewart, Stranger & Otlowski in 74(1) Clinical Genetics (2008) 20-30 and the Australian Human Rights & Equal Opportunity Commission (2002) note on 'Complaints of Genetic Discrimination under the Disability Discrimination Act: Case Studies'.