Abstract
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.
Highlights
You are informed that a test has been devised that could identify your genetic profile and be used to predict future potential, flaws, characteristics, traits and health. You might see this development as a positive advance but what if the resultant information could be accessed not just by your family and healthcare providers and future educators, employers and insurers? Would you welcome the creation and implementation of this technology or might there be concern about the informational implications for current and future generations? Would it make any difference if you discovered that this technology already exists, that it can be used by prospective parents to establish information about their unborn child and is widely available in the commercial sector in over sixty countries globally
The informational interests that we recognise and which we prioritise speak to the kind of society that we want to be
In the context of maternal claims to information about trivial and non-health matters, the Nuffield Council on Bioethics have suggested: “if the information on offer is not relevant to the woman’s reproductive autonomy, ie to decisions she may wish to make about her pregnancy, it is questionable that she has a right to all information of this nature.” 20
Summary
You are informed that a test has been devised that could identify your genetic profile and be used to predict future potential, flaws, characteristics, traits and health. This paper seeks to address the impact of this new technology – called non-invasive prenatal testing (NIPT) - that enables access to whole range of genetic and other information about the unborn child via a maternal blood sample during the early stages of pregnancy. This technology throws up a whole host of issues,[2] the specific focus of this paper concerns the potential impact on and possible regulation of related informational interests.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
