Regulating disruptive technology and informational interests in the arena of reproductive tests

Jeffrey Wale, researcher in the Centre for Conflict, Rule of Law & Society has published a paper titled ‘Regulating disruptive technology and informational interests in the arena of reproductive tests’ in the Journal of Information Rights, Policy & Practice.  This paper is an output from a wider research project (INFOSOC) looking at Informational Rights and Wrongs, and considers the disruptive impact of non-invasive prenatal testing upon informational interests.

This technology raises concerns about the ‘reasonable informational interests’ of the parties involved – the interest of pregnant women in making informed reproductive choices (including having information about the genetic status of their baby) and the possible interest of future persons in deciding for themselves what information about their genetic profile should be available. Following the introduction of testing, there are also wider issues around the societal characterisation of health and disability – most prominently, the fear that the elimination of certain genetic conditions will have a negative and discriminatory impact within society.

However, perhaps the most disruptive aspect of this technology is the potential shift from an ex post response to ex ante prevention of conditions and characteristics. The direction of travel and the desire to embrace this technology is clear. The presence of private global test providers in this arena pose a specific and significant regulatory challenge for State operators keen to control the implementation of this technology.