PET PET
  • My Account
  • Subscribe
Become a Friend Donate
  • About Us
    • People
    • Press Office
    • Our History
  • Get Involved
    • Become a Friend of PET
    • Volunteer
    • Campaigns
    • Writing Scheme
    • Partnership and Sponsorship
    • Advertise with Us
  • Donate
    • Become a Friend of PET
  • BioNews
    • News
    • Comment
    • Reviews
    • Elsewhere
    • Topics
    • Glossary
    • Newsletters
  • Events
    • Upcoming Events
    • Previous Events
  • Engagement
    • Policy and Projects
      • Resources
    • Education
  • Jobs & Opportunities
  • Contact Us
  • About Us
    • People
    • Press Office
    • Our History
  • Get Involved
    • Become a Friend of PET
    • Volunteer
    • Campaigns
    • Writing Scheme
    • Partnership and Sponsorship
    • Advertise with Us
  • Donate
    • Become a Friend of PET
  • BioNews
    • News
    • Comment
    • Reviews
    • Elsewhere
    • Topics
    • Glossary
    • Newsletters
  • Events
    • Upcoming Events
    • Previous Events
  • Engagement
    • Policy and Projects
      • Resources
    • Education
  • Jobs & Opportunities
  • Contact Us
  • My Account
  • Subscribe
  • Privacy Statement
  • Advertising Policy
  • Thanks and Acknowledgements
PETBioNewsReviewsEvent Review: Should Genes be Public?

BioNews

Event Review: Should Genes be Public?

Published 3 March 2014 posted in Reviews and appears in BioNews 744

Author

Karen Birmingham

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.

The eight professors, including two Knights, who contributed to this event, were given a relatively easy time by the public, possibly because there was little time for questions or perhaps because the case for mass genotyping projects had been convincing...

The eight professors,
including two Knights, who contributed to this event, were given a relatively
easy time by the public, possibly because there was little time for questions
or perhaps because the case for mass genotyping projects had been convincing.

Professors Sir John Burn, Stephan
Beck and Sir Rory Collins, in presenting their very different projects (Genomics
England
, Personal Genome Project and UK Biobank respectively) agreed on one
thing; vast numbers of participants are needed to produce results that would
hopefully lead to medical advances.

The familiar ethical issues - consent, feedback and
sharing data - were negotiated quite differently although the two UK-based
projects had similarities in their approach compared to the Harvard-initiated Personal
Genome Project (which is now extended to the UK).

The UK's unique position was alluded to more than once:
the public's trust in the NHS (perhaps now vulnerable due to the clumsy
introduction of care.data?); the tradition of national birth cohorts going
back to 1946; the altruism of the UK public who give blood (it's sold in the
USA).

Professor Burn gave
heartening examples of conditions where the choice of treatment is, or soon
will be, partially guided by patients' genetic make-up. He said that the
project had been substantially funded by the UK Government, which had taken all
involved by surprise and left them somewhat unprepared. He presented few risks
for participants wishing to enrol but as consent forms had still to be
finalised, the risks had yet to be articulated.

Genomics England's
prioritising of cancer, rare diseases and infections was commended by Professor
Marcus Pembrey
. He mentioned that he had been worried that these conditions,
which could be readily targeted with potentially great benefits to patients,
would be bypassed for other more common disorders.

Professor Beck's description
of the Personal
Genome Project as 'citizen science' emphasised the qualities of the
participants; not only their altruism but also their active involvement in the
project.

To ensure genuinely informed consent, enrolment is only
possible once an online examination has been passed. The risks are
substantial, as consent allows for genuinely open (i.e. public) access to volunteers'
genomic and phenotypic data. The participants can even choose to add their name
and photographs to the data sets but even if they don't, it is made clear that
anonymity cannot be guaranteed.

Despite the worst case scenarios outlined on the
website - which go all the way to having identical synthetic DNA planted at
crime scenes - there have been no participants withdrawing from the study or
even expressing negative feedback. As one of the attendees said after the event:
'How can one withdraw when the data is already "out there"?'

Professor Collins, no longer
recruiting for UK Biobank, did not have to be so
enthusiastic. He generously acknowledged that response rates for Biobank were highest
in Bristol because the population understands the benefits of cohort studies
due to the locally-based 'Children of the 90s' project (also known as the Avon
Longitudinal Study of Parents and Children or ALSPAC). He said he was proud to
be an epidemiologist and not a geneticist as genetics was the easy bit; phenotyping
was the difficulty, he said, especially aspects of lifestyle.

UK Biobank operates with a
comprehensive policy for participant feedback - it gives none at all. Professor
Collins began to justify this by saying that so many of the concerns that could
be raised when looking at results came to nothing and were in fact 'false
positives'. He ended perhaps more honestly: 'If we once started feeding back
individual results we wouldn't know where to stop'.

Little time was left for the expert
panel (Professors Paul Burton, Ian Craddock, Jane Kaye and Marcus Pembrey) to
answer questions from the floor or indeed debate their own concerns. We were
left wondering about the misuse of data, the unnecessary anxieties of the 'worried
well' and the implications of the possible loss of trust in the NHS.

Related Articles

Image by Bill Sanderson via the Wellcome Collection, © Wellcome Trust Ltd 1990. Depicts Laocoön and his family (from Greek and Roman mythology) entwined in coils of DNA.
Image by Bill Sanderson via the Wellcome Collection, © Wellcome Trust Ltd 1990. Depicts Laocoön and his family entwined in coils of DNA (based on the figure of Laocoön from Greek and Roman mythology).
Reviews
18 April 2016 • 2 minutes read

Event Review: Health data - better care or privacy nightmare?

by Ari Haque

This discussion stayed too safe. Panellists came equipped with relevant case studies and analogies to demonstrate their opinions, but did not challenge each other or the audience as much as they could have...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
Comment
20 October 2014 • 4 minutes read

Genomic medicine needs you - do you need genomic medicine?

by Dr Kimberley Bryon-Dodd

The Progress Educational Trust's event on the 100,000 Genomes Project gave the general public an opportunity to ask a panel of experts about the ethics of the project, the security of the data and its long-term
sustainability...

PET BioNews
Comment
16 June 2014 • 3 minutes read

Farewell from me and welcome to Fiona Fox

by Professor Marcus Pembrey

When the Progress Educational Trust - the UK charity that publishes BioNews - emerged from the Progress Campaign for Research into Human Reproduction in 1992, I had no idea that I would end up chairing the Trustees for 20 of the last 22 years!...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
Reviews
17 March 2014 • 4 minutes read

Event Review: Bio-Revolution

by Chris Hardy

At the Science Museum's 'drinking and thinking' event, visitors extracted DNA from strawberries and discussed genome sequencing in the NHS...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
Reviews
9 December 2013 • 3 minutes read

Radio Review: Inside Science - The Personal Genome Project

by Victoria Rivas Llanos

The Personal Genome Project (PGP) was launched in the UK the last November. The project, which was set up in USA in 2005, works on open access of genome sequence information of the 100,000 expected participants...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
Comment
9 December 2013 • 4 minutes read

23andMore genetic data than UK Biobank

by Dr Ruth Stirton

23andMe and UK Biobank are both large genetic databases: big enough to engage in serious population genetic research. But 23andMe has not undergone any ethical approval processes - think what they could do if they sold their database...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
Comment
18 November 2013 • 3 minutes read

In defence of privacy

by Dr Stuart Hogarth

Is the newly launched Personal Genome Project's public disclosure policy the best response to the difficulties of safeguarding genomic confidentiality?...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
News
8 November 2013 • 3 minutes read

Call for volunteers for open-access genome project

by Simon Hazelwood-Smith

The UK branch of the Personal Genome Project has launched, with the aim of sequencing the genomes of 100,000 British volunteers...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
News
25 October 2013 • 1 minute read

Rare Disease Genomes Project to sequence 10,000 whole genomes

by Dr Lucy Freem

A three-year joint project to sequence the genomes of 10,000 rare disease patients has been announced by the University of Cambridge, Genomics England and Illumina...

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.
News
20 February 2013 • 1 minute read

UK Biobank, the world's largest biomedical database, opens online

by Cait McDonagh

The world's largest database of medical information has opened online, allowing researchers around the world to access its contents. The UK Biobank holds anonymous information from more than 500,000 British people, making it a 'globally unique resource' according to England's chief medical officer, Dame Sally Davies...

Leave a Reply Cancel reply

You must be logged in to post a comment.

« Radio Review: Health Check - Would You Want to Find Out About an Inherited Genetic Condition?

Data-Label The UK's Leading Supplier Of Medical Labels & Asset Labels

RetiringDentist.co.uk The UK's Leading M&A Company.

Find out how you can advertise here
easyfundraising
amazon

This month in BioNews

  • Popular
  • Recent
1 August 2022 • 3 minutes read

Podcast Review: Stories of Our Times – IVF, fraud and 'unwanted' children

25 July 2022 • 4 minutes read

TV Review: DNA Family Secrets – series two, episode six

18 July 2022 • 4 minutes read

TV Review: Spotlight – The babymaker uncovered

4 July 2022 • 3 minutes read

Podcast Review: Biohacked Family Secrets – The birth of the sperm bank

20 June 2022 • 5 minutes read

Documentary Review: Our Father

8 August 2022 • 4 minutes read

Podcast Review: Babbage – Editing the code of life

1 August 2022 • 3 minutes read

Podcast Review: Stories of Our Times – IVF, fraud and 'unwanted' children

25 July 2022 • 4 minutes read

TV Review: DNA Family Secrets – series two, episode six

18 July 2022 • 4 minutes read

TV Review: Spotlight – The babymaker uncovered

11 July 2022 • 4 minutes read

TV Review: DNA Family Secrets – series two, episode three

Subscribe to BioNews and other PET updates for free.

Subscribe
  • Twitter
  • Facebook
  • Instagram
  • LinkedIn
  • YouTube
  • RSS
Wellcome
Website redevelopment supported by Wellcome.

Website by Impact Media Impact Media

  • Privacy Statement
  • Advertising Policy
  • Thanks and Acknowledgements

© 1992 - 2022 Progress Educational Trust. All rights reserved.

Limited company registered in England and Wales no 07405980 • Registered charity no 1139856

Subscribe to BioNews and other PET updates for free.

Subscribe
PET PET

PET is an independent charity that improves choices for people affected by infertility and genetic conditions.

  • Twitter
  • Facebook
  • Instagram
  • LinkedIn
  • YouTube
  • RSS
Wellcome
Website redevelopment supported by Wellcome.

Navigation

  • About Us
  • Get Involved
  • Donate
  • BioNews
  • Events
  • Engagement
  • Jobs & Opportunities
  • Contact Us

BioNews

  • News
  • Comment
  • Reviews
  • Elsewhere
  • Topics
  • Glossary
  • Newsletters

Other

  • My Account
  • Subscribe

Website by Impact Media Impact Media

  • Privacy Statement
  • Advertising Policy
  • Thanks and Acknowledgements

© 1992 - 2022 Progress Educational Trust. All rights reserved.

Limited company registered in England and Wales no 07405980 • Registered charity no 1139856