Genetic discrimination, the excessive profiling or negative treatment of individuals based on their genetic characteristics is a recurrent ethical issue and a source of psychological distress for individuals considering undertaking a genetic test. Moreover, similarly to sexual, religious or disability-based discrimination, genetic discrimination is a source of exclusion and effectively limits the social and professional opportunities of its victims (Wauters A and Van Hoyweghen I, 2016).
Issued by UNESCO in 1997, the Universal Declaration on the Human Genome and Human Rights stipulates: '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 freedoms and human dignity.'
This foundational, solemn document paved the way for the adoption of numerous national laws on this topic. Many European countries (for example, France, Germany, Belgium and Estonia) have now adopted public policies limiting the discriminatory use of genetic information, mostly in the contexts of private personal insurances and employment contracts. In North America, Mexico, the USA and, more recently, Canada, have adopted anti-genetic-discrimination laws. Outside of these regions, the legislative drive has been more moderate (Joly Y et al, 2017).
Considering this vibrant legislative activity, it is somewhat surprising to note that the incidence of genetic discrimination was and remains quite low. In fact, in the field of life insurance, only in the cases of a very small number of single gene, highly penetrant, life-threatening conditions (Huntington’s disease, sickle cell anemia, hereditary BRCA1/BRCA2 predisposition to breast cancer) is there substantial evidence attesting to the existence of discriminatory practices.
The anxiety over genetic discrimination is, however, very pervasive according to multiple surveys. This last fact, along with a strong mobilisation of stakeholders against perceived and hypothetical discriminatory practices, likely explains the intense legislative drive (Joly Y et al, 2017).
Given the large number of countries that have now adopted anti-discrimination laws, is the genetic discrimination problem now resolved? This conclusion would be premature. Emerging evidence shows that legal approaches proposed so far comport significant issues of scope, terminology and are insufficiently nuanced to effectively address the complex, rapidly evolving nature of genomic science and technologies.
For example, laws preventing the use of genetic information for insurance underwriting commonly exclude family history and diagnostic genetic tests from the protection they provide, which is a self-defeating strategy. They also do not provide a convincing rationale for singling out genetic information from other information predictive of health risks (cholesterol level, HIV status, cancer remission, weight measurements). Moreover, because of the lack of effective public communication campaigns to promote those policies, public awareness and use of legal remedies remain low.
The research on genetic discrimination has also exceedingly focused on the field of insurance, which has had the unfortunate effect of providing only a very limited portrayal of the phenomenon. Arguably, this strong focus on genetic discrimination in insurance could also be more reflective of a general discontent of the public about controversial aspects of the private insurance industry (such as lack of transparency of actuarial decisions, intense processing of personal information, exclusion of vulnerable individuals from benefiting from the financial security provided by insurance) than about the 'truly unique' issues created by the use of genetic information in insurance underwriting (Joly Y et al., 2013).
Anti-genetic-discrimination laws do provide the short-term benefit of reassuring some members of the population who are aware of their existence and believe they offer them comprehensive protection. However, considering the mostly low rate of genetic discrimination and the limited effectiveness of public policies in addressing it, a better way forward is needed.
The first priority should be to achieve a broader, more anticipatory view of genetic discrimination through the implementation of well-designed, innovative surveys, interviews and meta-analyses. Problematic areas could then be targeted via specific administrative policies that could be easily implemented, more nuanced and easier to adapt to new developments than statutory laws. Finally, dynamic and broad stakeholder engagement through multiple discussion forums will be key to eliminate discriminatory practices.
The human genome is the common heritage of humanity, but genetic information is never the sole determinant of one's future health. Progress in genetics is not limited to illuminating new disease risks or ways to identify individuals and relationships – it also presents a unique opportunity to improve preventive care and solidarity measures in healthcare. Better knowledge of our similarities and differences and of their relative impact on our health, could ultimately become our strongest defence against genetic discrimination.