Starting pieces for a short paper on defining ‘genetic discrimination’

art. 1 of UNESCO Convention against Discrimination in Education

“discrimination” is defined by the UNESCO as  “any distinction, exclusion, limitation or preference which, being based on  (a prohibited ground), has the purpose or effect of nullifying or impairing equality of treatment in (----)’’

Article 6, Declaration on the Human Genome and human rights (1997)

‘’No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedom and human dignity’’

Some questions to address:

• Should GD based on the use of scientific evidence (rational GD) be treated differently than GD that is not based on evidence or is unjustified from a scientific standpoint (irrational GD)?

• Does refusing a person’s coverage to scientifically valid and clinically useful genetic tests/personalised medicine constitute genetic discrimination?

• Should the use of genetic information by state agencies, for forensic purposes, be exempted from GD policies?

• How broad should we construe the terms ‘genetic characteristics’ if we use them as part of a definition of GD?  (ex. DNA methylation? Familial history of hereditary diseases? Genetic test results?)

• The perception of GD by the population is likely higher than its actual incidence and in its own way could be as damaging; for example, by dissuading individuals from partaking in research or clinical grade genetic testing. How can a definition of GD take this into consideration?

• Should ‘genetic characteristics’ be explicitly protected from discrimination, compared to all types of predictive health data, or all health data that can be used as a biometric marker which are currently not explicitly protected? If so, why?