At the request of the Nuffield Council on Bioethics, the UK’s Science and Technology Committee is launching a national survey to poll British people about commercial genetic tests for the general public. Among the future consumers “some have expressed concerns about the potential risks involved […] especially about the tests’ reliability and accuracy, the guidance available to consumers for understanding the results and subsequent follow-up, and the impact of these commercial tests on the NHS[1]“.
Written contributions are expected by April 26. They must be about the following topics: the benefits (health-related or other) of these commercial genetic tests, the “advisability of an industrial strategy”, the extent to which results can be “accurate and unambiguous”, advice and support for test purchasers, the risks and benefits to the NHS of increasing the volume of these tests, consumer protection (is it currently sufficient?), and finally “the potential benefits and risks to individuals and the NHS, and the ethical implications of the NHS offering genomic tests to healthy individuals willing to pay and share their data anonymously”.
Norman Lamb, MP and chairman of the Science and Technology Committee, pointed out that interpreting genetic test results remains a “complex process “, which may require “psychological and emotional support”. The “ethical and practical considerations” deserve to be taken seriously. “The purpose of this survey is to establish whether the current regulatory framework for commercial genetic tests is suitable for their intended use,” he concluded.
For further reading:
UK Department of Health to extend sequencing to “genomic volunteers”
www.parliament.uk (04/03/2019) – Commercial genomics inquiry launched