If you ask prospective parents what they want for their child, most would say ‘I just want them to be happy and healthy’. But as pre-natal genetic screening becomes more widely available, is ‘happy and healthy’ enough? Non-invasive pre-natal screening (NIPS) is colloquially referred to as ‘the Down syndrome test’. NIPS marketing material provides scant detail about what a life with Down syndrome might hold, but the message is clear: a positive result for Trisomy 21 is undesired. But the future is brighter than ever before for people with Down syndrome, many of whom are fully included in mainstream education, attend tertiary education, hold down jobs, live independently and find love. Health problems like heart conditions can be corrected soon after birth. So with ‘happy’ and ‘healthy’ accounted for - why are 9 out of 10 pregnancies terminated after Down syndrome is confirmed? Are presumptions being made about lives worth living?
A short summary of the issue the documentary is addressing
What are the implications for our society when presumptions are made about whether a life is worth living? Nine out of ten pregnancies are terminated when Down syndrome is confirmed. And Down syndrome is just the beginning. At the heart of this pro-choice, disability positive documentary exploring the wider use of pre-natal screening technology are the insights of real experts - people with Down syndrome and their families. Academics and scientists in the fields of bioethics, medicine and pathology will consider some of the trickiest questions of our time: How do we understand and value difference? Are presumptions being made about lives worth living? What does an ethical approach to pre-natal screening look like? And how it can be achieved.
What is the impact vision statement of the documentary?
Research suggests Down syndrome is not the problem but rather bias, stigma and community attitudes toward people with Down syndrome. Decisions about unexpected screening results are not immune to this broader societal context. Pro-choice, disability positive community education is required to challenge presumptions about lives worth living. Happy and healthy will generate discussion about advancing genetic science and what it means for the future of families and the inclusivity of communities.
What outcomes does the project hope to achieve from making this documentary?
It is hoped that the film will contribute to changes in knowledge, attitudes and behaviour both within medical and health science settings specific to the provision of pre-natal screening and in the broader community.
Changes to public health policy requiring balanced information provision by those providing pre-natal screening would be a desired medium-term outcome. Ultimately the film hopes to create better informed consumers of non-invasive pre-natal screening.
How will this documentary achieve its outcomes?
Partnership with Down Syndrome Australia will ensure the film is informed by the lived experiences of people with Down syndrome and their families. Support from Uni of Melbourne will optimise the relevance of the film to health sciences and medical students. The documentary will be developed with advice from key stakeholders who will form a project advisory group. Advisory group members will support the distribution of the film within their networks. Discussions are ongoing with biotechnology companies. Some have indicated interest in supporting the development of the film. Discussions have taken place with the University of Melbourne about the possibility of a partnership with the School of Culture and Communication to maximise and measure reach and impact. Partnering with Cool Australia will allow upper secondary school students to better understand emerging genetic technology. A social media strategy will promote community screening events with question and answer sessions.
How will partnerships with this project help inform the project development?
The primary partner Down Syndrome Australia is in full support of the documentary which aligns with plans for a national strategy to enable informed choice about pre-natal screening. More specifically, the expertise of the Down Syndrome Advisory Network (DSAN), a group of people with Down syndrome chosen to work together to provide direct advice to the Down Syndrome Australia Board, will also be sought. University of Melbourne, Melbourne Disability Institute supports the project. Confirmed interviewees include: Dr Ellen Skladzien - CEO Down Syndrome Australia; Dr Brian Skotko - Associate Professor at Harvard Medical School, Medical geneticist at Massachusetts General Hospital, Director, Down Syndrome Program at Massachusetts General Hospital; Dr Chris Kaposy - Associate Professor of Bioethics in the Faculty of Medicine at Memorial University, Newfoundland; Dr Leslie Cannold - Bio-ethicist, researcher, writer, commentator.
Audience Engagement and Social Impact
What actions does this project hope for its viewers after seeing this film?
Health professionals advising families as they access pre-natal screening will be better informed to support and provide accurate and balanced information to assist decision making.
Expectant parents will engage with advancing genetic technology as informed consumers.
Measurement and Evaluation
What is the projects indicators for success?
An increase in public discourse about what an ethical screening program would look like and how this can be achieved.
A commitment by Government to the ethical implementation of advancing screening technology.