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Podcast Review: Hidden family secrets revealed by genetic testing

9 March 2020
Appeared in BioNews 1038

'What is it to be human? What is it to be family?' These are the words of this week's interviewee, Jack Nunn, on The Genetics Society 'Unzipped' podcast: 'Hidden family secrets revealed by genetic testing'.

As a PhD researcher in genomics himself, you might expect him to be the token expert of an academic interview, but he is in fact just one of many who have discovered unknown (and in many cases, unwanted) information about his family through genetic testing.

Today, it is easier and cheaper than ever before to decode our genomes, both for medical purposes and purely out of curiosity. Legislation and policy on the other hand, is racing to catch up with these technologies, which present new territory for 21st Century decision-makers.

The podcast adds to an already thriving debate on the ethics and complexities surrounding genetic testing, whether it be testing for risk factors for disease (such as the BRCA test for breast cancer risk) or in the form of 'do-it-yourself' genealogy kits, such as AncestryDNA or 23andMe. The latter, branded as a means of fun, have in fact already opened a Pandora's box of questions that society has never-before faced, such as: who has access to our genetic information?; and, who decides what it can and cannot be used for?

The episode begins with a conversation with Nunn, founder of the organisation 'Science for All', which gathers opinions from genomic research participants and involves them directly in what the data is used for.

We learn how, after buying a DNA test for his mum, she was shocked to discover that she had around 600 half-brothers and sisters. Her father, it transpired, was Bertold Wiesner, a fertility scientist who donated sperm for one of the first ever practices of artificial insemination in London in the 1940s. The fertility clinic, run by Dr Mary Burton, was condemned at the time, and the highly selective criteria for sperm donors has murky eugenic undertones.

The podcast doesn't delve too deeply into this emotional side of the debate, which feels a little like an opportunity missed, but instead focuses on presenting a comprehensive overview of the wonders and dangers of genetic testing, allowing us to make up our own minds.

Hosted by Dr Kat Arney of The Genetics Society, the podcast adeptly involves the listener in a topic that is often presented as complicated for a general public to understand. Although few of the arguments are novel, what is refreshing is the overriding message that the public must be given more power, both in how this research is conducted and how this data is used.

More than that, the documentary accepts that there are grey areas as to how these new technologies and their powers are wielded. Dr Arney and her second interviewee, Dr Anna Middleton, Head of Society and Ethics Research at the Wellcome Genome Campus in Cambridge, discuss how a genomic database helped catch the notorious Golden State Killer and bring him to justice.

Yet for every story like this, there are hundreds more of regular families like Nunn's, of people left shell-shocked by the revelation that their parents, sisters or brothers are not who they thought they were. As becomes apparent listening to the podcast, we as a society will have to find a way to reconcile extreme cases such as these with research that advances science.

The episode doesn't shy away from some of the more frightening concerns about genetic testing and confronts the listener with the fact that we might already be losing control over our own DNA. Dr Middleton simply states:

'Even if you've never personally had a genetic test or bought a test, if you're biologically related to somebody who has then their data will be online somewhere. It will sit in a database that is probably being sold to industry and is probably being shared around the world at the moment.'

The message is clear: genetic testing is something which, like it or not, will affect us all. For the most part, then, the podcast portrays a well-rounded and balanced look at genetic testing, although opinions from some non-experts would have been a welcome addition.

For those hoping for an exposé on a scandalous family drama, this podcast is possibly not for you. The podcast has a much broader objective of bringing this complicated (but necessary) debate to public attention. Now that deciphering our genomes is becoming a part of everyday life, rather than a pipe dream of the maddest scientists, it's time for us as the public to get involved. If you would like to expand your perspective on one of the most relevant scientific breakthroughs of the past century, this podcast is well worth a listen.

SOURCES & REFERENCES
Hidden family secrets revealed by genetic testing
The Genetics Society |  16 January 2020
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