Jeffrey Wale, a researcher from Bournemouth University’s Conflict, Rule of Law and Society Research Centre presented a paper on the regulation of the informational aspects of non-invasive prenatal testing at the TRILCon (Trust, Risk, Information and the Law) 2018 Conference organised by the University of Winchester on the 25 April 2018.
The 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. The paper argues that the informational interests that we recognise (whose and which interests) and which we prioritise speak to the kind of society that we want to be.
Secondly, we should not assume that it will be easy to regulate for the kind of society that we want to be and there are no guarantees of regulatory effectiveness in any event. And, thirdly, unless we do clarify our thinking about our informational interests, there is absolutely no chance of regulating in support of our societal vision. Each community needs to urgently address their specific priorities around the protection and promotion of informational interests before it is too late to roll back this technology and the societal demand for these tests.