Genetic discrimination: problem or paradox?

What ELSI is new (article)This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Alison Hall and Caroline Wright, PHG Foundation.

Over the last decade, our acquisition of genetic knowledge has gathered pace; whole human genome sequencing is now within reach, as accessibility increases and prices tumble. One consequence has been to challenge existing conceptions of what the term ‘genetic’ actually implies. The popular perception that a person is shaped solely by their genes has been undermined by the sheer volume, complexity and mundane nature of much genomic information. Whilst genomics and personalised medicine have the potential to unlock copious biological secrets and yield enormous medical benefits, other forms of information (such as family history, medical imaging or other biomarkers) may be equally useful, predictive and personally sensitive.

It therefore seems all the more perplexing that ‘genetic exceptionalism’ – namely the notion that genetic material is special and distinctive – remains an enduring belief amongst the general public and relevant professional disciplines. The concern that third parties, such as employers or insurers, who have access to this information could use it in ways that discriminate against the individual to his detriment has already prompted some jurisdictions to impose legislation banning ‘genetic discrimination’. Such legislation is aimed at preventing employers from excluding those susceptible to future disease from potential employment, or insurers from using the results of genetic tests to identify and exclude at-risk individuals, ultimately leading to the creation of an unemployable and uninsurable genetic underclass.

The spectre of genetic discrimination seems likely to restrict generalised access to new genomic technologies. Relegating personalised medicine to the monopoly of professional elites is, in our view, misguided, unenforceable and unnecessarily paternalistic. However, worries about genetic discrimination still cast a shadow over the development of proportionate regulation, which requires education of citizens and institutions alike. Concerns over genetic discrimination must therefore be addressed in a practical and appropriately nuanced manner before the full promise of genomics and personalised medicine can be realised.