Certification System for Genetic Testing (Science View)

genetestnhkBroadcaster: NHK World

Year: 2017
(originally broadcast Aug 2015)

Genre: News

Length: 1:45

URL: https://learningonscreen.ac.uk/ondemand/index.php/clip/85837

Review by June Adams

This short clip from the English-speaking Japanese channel announces the introduction of a regulatory body for genetic testing in Japan. Establishment of The Council for Protection of Individual Genetic Information (CPIGI) was prompted by a number of concerns. For example, companies offering tests Direct-to Consumer (DTC) genetic testing have not necessarily given sufficient diligence to the security of private genetic information, or to the interpretation of the results. This is especially true for diseases that result from the interaction of multiple gene products as well as the influence of environment on expression of those genes (so called GxE interactions). The clips cites diabetes and Alzheimer’s disease as examples where a correlation with a particular allele at a particular gene may be hard to quantify.

The CPIGI, which launched in Oct 2015 (after the initial broadcast of this episode) is an umbrella group for 25 companies and offers a checklist of over 200 items intended to enhance trust between genetic test providers and clients. This includes the importance of genetic counselling. The launch of CPIGI has been controversial (e.g. see here), especially regarding the lack of consultation.

See this post for details of clips from Newsnight and BBC Breakfast in 2014, regarding the UK launch of DTC genetic service 23andMe.

 

Should I test my genes?

Preimplantation Genetic Diagnosis is a crucial element to tackling many of the genetic diseases covered in this programme

Preimplantation Genetic Diagnosis is a crucial element to tackling many of the genetic diseases covered in this programme

Broadcaster: BBC 2

Year: 2011

Genre: Documentary

URL: http://bobnational.net/record/265684

Review by Amy Evans

As we uncover more about our genome, the more we are identifying genes associated with different diseases. In this excellent hour-long documentary Should I test  my genes: the price of life? film-maker Adam Wishart meets several people who may (or may not) have a genetic predisposition to a range of different conditions. Although the documentary does not go into much detail about the underlying molecular genetics of the diseases covered, this is a good programme to watch for anyone doing genetics modules that cover human genetics and/or any bioethics modules.

The broad range of topics covered include (with timings for useful clips):

Throughout the documentary, Wishart not only talks to families affected by the various genetic diseases, but also adds his own personal experience. For example, he has to decide if he wants to undergo genetics after his mother, and many other members of his family, had been affected by cancer. Continue reading

Direct to consumer genetic testing (Newsnight)

Evan Davies, Ewan Birney and Paula Bonnington discuss the availability of genetic testing

Evan Davies, Ewan Birkitt and Paula Bonnington discuss the availability of genetic testing

Broadcaster: BBC2

Year: 2014

Genre: Factual, News magazine

http://bobnational.net/record/265771 (Newsnight) and
http://bobnational.net/record/265770 (BBC Breakfast)

On 2nd December 2014, the day that Direct-to-Consumer genetic testing by the company 23andMe was launched in the UK, the BBC’s Newsnight programme ran a 12 minute feature which included an interview with Anne Wojcicki, CEO of the company. As well as discussing the practicalities of what is involved, the story also included comment from Prof Mark Thomas from UCL who urged caution about taking these results too seriously, and reflections on the ethics of the approach (the Food and Drug Administration in the USA has banned 23andMe from making any health claims for their product).

Concerns include the accuracy of the tests (false negatives and false positives), appropriate interpretation of the results (do we really understand the link between a certain genotype and a disease) and data privacy (the data is kept by the company for research and sold to academics and pharmaceutical companies, but not – they promise – to insurance companies). Wojcicki confirmed that the test might be appropriate for couples who are dating, for example if allowed them to know in advance that they are both carriers for cystic fibrosis.

The second half of the clip features a discussion with Ewan Birney, Associate Director at the European Bioinformatics Institute, and Paula Boddington from Oxford’s Centre for Health, Lawand Emerging Technologies.  Birney, who has a research interest in this area, has taken the test himself and found it a cost-effective way to access his own genome. Although he takes some of the results “with a pinch of salt” there was he felt merit in this approach. He sees it as only one of many forms of personal data which are out in cyberspace, including Facebook and financial details. “Some of that data” he says “is much more personal to me than my genome”. He reckons people can learn more about you from your supermarket loyalty card than they can from your genome. Boddington is rather more cautious, and does not consider it an appropriate gift for someone else. What if the test came back to indicate that you have a high risk for developing Alzheimers?

 

DTC2The following morning, the same story was included on the BBC Breakfast show. After the obligatory vox pop interviews out on the street (which are actually of slightly more value than such soundbites can often be), Anne Wojcicki was interviewed again.

 

As is usual with the Breakfast show format, the story was considered more than once. This 16 minute clip (http://bobnational.net/record/265770) is actually a combination of two “bites” at the story. The first (9 minutes) includes the interview with Anne Wojcicki and opinion from regular contributor GP Dr Rosemary Leonard and specialist guest Prof Neil Hall, co-director of the Centre for Genomic Research at the University of Liverpool. The second time around, Dr Leonard is joined in the studio by Manchester bioethicist Iain Brassington.

Those interested in knowing more about the ethics of Direct-to-Consumer genetic testing are recommended to read the Nuffield Council on Bioethics 2010 report on Personalised Healthcare, which includes a chapter on Personal Genetic Profiles of this kind. In 2013, my students also produced a video on DTC.

At the time of writing, the Newsnight piece was also available as a clip on the main BBC site (see here).