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

Authors: Wale, J.

Editors: Oswald, M. and Ryan, H.

Journal: Journal of Information Rights, Policy and Practice

Volume: 3

Issue: 1

Publisher: Winchester University Press

eISSN: 2398-5437

Reproductive health care has seen the emergence of technologies that are disruptive in both positive and negative ways. Most notable amongst these technologies has been the development of non-invasive prenatal testing – an easy and safe mechanism for obtaining information about the mother and her developing child. The technology has the scope to yield genetic information that goes significantly beyond the needs of medical treatment. This 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 (for example, to remedy, alleviate, accommodate or embrace) 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. This paper seeks to explore the legal and ethical issues arising from these developments (with specific reference to the impact on informational interests) and to offer some possible regulatory responses within a global village.

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