NIPT – exploring the views of patients, families and advocacy groups

By Tara Clancy, Council Member

Patients, families and advocacy groups are amongst those who have an interest in the ethical questions that non-invasive prenatal testing (NIPT) raises. So, what have we done to ensure their views and experiences are included and to enable them to contribute to the Council’s current project on NIPT?

The online call for evidence (now closed) took the form of an anonymous survey for people with a personal or professional interest in NIPT. Of a total of 722 responses, we heard from 335 people who have a family member or a close friend with a genetic condition, and 22 people who have a genetic condition themselves. There was also a consultation document for more in depth responses, to which we received 28 responses. Several of these were from organisations for people with genetic conditions or variations and their families.

One (of four) evidence gathering meetings involved family members of people with genetic conditions or variations that NIPT can test for, such as Down’s, Edwards’ and Patau’s syndromes, and the organisations that support and campaign with and for them. In addition, a number of people with genetic conditions, such as cystic fibrosis and spinal muscular atrophy, have talked to us on a one-to-one basis about their views and experiences.

A particularly significant step has been partnering with the national learning disability charity Mencap to explore prenatal genetic screening with people with Down’s syndrome directly. Though people with these variations have an important interest in the debate on NIPT, their views often go unheard. One-to-one interviews with seven adults with Down’s syndrome have been carried out by Dr Barbara Barter, a Clinical Psychologist. Dr Barter has previous experience of exploring the views and experiences of adults with Down’s syndrome about prenatal testing.¹ The individuals taking part in the interviews were recruited through advocacy and campaigning organisations across the UK, and the work was subject to an independent ethical review process.

The Council has consulted a wide range of other individuals and groups throughout the project, including healthcare professionals involved in screening, women who have had a recent experience of NIPT or prenatal screening, manufacturers of NIPT tests, scientists and researchers, and government and professional bodies.

All the views, experiences and evidence that we have gathered has provided us with an excellent picture of what is happening now in prenatal screening and testing, what the future might hold with the increasing use and availability of NIPT, and the range of views and concerns about this held by key stakeholders. We would like to thank everyone who has taken part in different ways for taking the time to help us with our work.

We will publish our findings and conclusions on NIPT in March 2017. Dr Barter’s report from the interviews with adults with Down’s syndrome will also be published then.

¹ Barter B, Hastings RP, Williams R and Huws JC (2016) Perceptions and Discourses Relating to Genetic Testing: Interviews with People with Down Syndrome Journal of Applied Research in Intellectual Disabilities

Find out more about the Council’s work on NIPT.

Comments

  1. This is really marvellous -- to have access to this series of lectures, while sitting in front of my computer! Sev S. Fluss says:

    Please convey my warm regards to David Shapiro, whom I visited many times at the Council when it consisted of David and one Secretary
    Sev S. Fluss (ex-WHO, Geneva)

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