Increased access to reproductive genetic testing – silver bullet or Pandora’s box?

Selina Metternick-jones1

1South Metropolitan Health Service , Perth , Australia

The integration of reproductive genetic testing into clinical care presents both opportunities and challenges to parents in regards to shaping the lives of their future children. Increased access to reproductive genetic tests has the potential to prevent harm in the form of severe genetic conditions, as well as provide significant cost savings for the government. This access will result in the relationship between parents and their future children becoming  more complex and questions being raised in regards to the responsibility that potential parents have to protect the interests of their future child.

In the 2018 federal budget the Commonwealth Government committed to providing  $500 million for the Australian Genomics Health Futures mission with the aim of providing thousands of couples with pre-conception carrier testing for serious, though rare, genetic conditions including spinal muscular atrophy, Fragile X and cystic fibrosis. Policy makers and regulators must consider the impact of this testing on other healthcare services sought by potential parents and the moral and legal constraints around what parental decisions are permissible.

In this presentation I will discuss the need to ensure equitable access to other reproductive genetic technologies that parents may wish to use following preconception testing, such as IVF and pre-implantation genetic diagnosis. In addition, I will discuss the ethical issues associated with the various decisions potential parents may make following the use of pre-conception carrier testing. This includes the permissibility of implanting embryos with known genetic abnormalities, making decisions based on mutations with unknown penetrance and whether current regulatory frameworks are sufficient to protect parents as well as the interests of future children.


Biography:

I am the Ethics Coordinator at the South Metropolitan Health Service. I provide education and mentoring services to researchers and have implemented hospital wide changes to improve the efficiency and performance of the ethics committee. I have completed my Masters in Bioethics focusing on parental responsibility in the use of preimplantation genetics diagnosis and have previously completed an Honors thesis on access to reproductive genetic testing in Australia. My areas of interest are the issues surrounding reproductive genetic technologies, access to genetic testing and genetics in research and am currently undertaking a Graduate Certificate in Applied Law.