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
PETBioNewsCommentTen questions for Lone Frank, author of 'My Beautiful Genome'

BioNews

Ten questions for Lone Frank, author of 'My Beautiful Genome'

Published 6 December 2012 posted in Comment and appears in BioNews 627

Authors

Dr Vivienne Raper

Ruth Saunders

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.

'We are not our genomes'. Lone Frank, the author of 'My Beautiful Genome — Exposing our Genetic Quirks, One Genome at a Time' spoke to BioNews about her latest book, the recent surge in direct-to-consumer genetic tests, the ethical dilemmas they could pose and what we can understand from such tests. As he says, 'genetics is a work in progress'...

Do direct-to-consumer (DTC) genetic tests empower individuals or are they a waste of money?

I believe the empowerment lies mostly in getting the consumer interested in genetics and getting them to engage with the developments in the field. Of course, some of the tests are quite actionable — markers related to a disposition for heart-disease, prostate cancer and a number of other illnesses which may be prevented by screening programs and physiological testing.

Is there a direct-to-consumer genetic test on the market that you would be hesitant to take for fear of the results?

I would say no. I have taken tests for BRCA-1 and 2, hereditary breast cancer and for ApoE-lipoprotein connected with elevated Alzheimer's risk. I was nervous — who wouldn't be — but personally, I would rather know of such risks than suddenly find out when a doctor slaps me with a diagnosis.

Do you think we can take the results of DTC genetic tests seriously yet? Or do you think there are some tests that are more clinically valid and useful than others?

Of course, some tests are clearly more 'recreational' than others. That you have blue eyes, wet ear wax or a flush reaction to alcohol is something you already know. But SNP (single nucleotide polymorphism)-information related to elevated risk for certain diseases is actionable as I've mentioned. An area that to my mind is underappreciated is the genetics of drug metabolism. There are several tests for how an individual metabolises a range of drugs and the US Food and Drug Administration (FDA) actually recommend that doctors use such tests before prescribing 70 named medications. But only about a percent of doctors do, it turns out. This is deplorable when we know that the wrong medication or the wrong dose is a significant cause of death.

Do you think members of the public should have access to research findings before they have been clinically validated? Is 'recreational genomics' a sufficient justification for such access?

Interesting question. You might also ask: should the public have access to all sorts of food supplements and alternative 'medicine' when their effects haven't been clinically validated? I don't think the current genetic tests pose a danger to consumers — the worst case scenario is that they get a disease scare and go to the doctor to have it cleared up. Clearly, genetics is a work in progress and we have the choice of using the best of the present knowledge or waiting till everything is figured out and clinically validated — doing the latter will no doubt take a very long time and cost lives along the way.

How would you feel about sharing the results of genetic tests purchased on the DTC market to your family or friends?

Personally, I feel fine — after all I have written a book where I share quite a bit of my genetic information. And as I express in the book, I have great sympathy for projects such as the Personal Genome Project where thousands of volunteers agree to share genetic and detailed health information on the web in order to create a giant research database with free access. As I stress: We are not our genomes. And I think that there are more advantages in sharing the information and thus making better research possible than there are disadvantages in keeping it under wraps. The much publicised fear of how employers and insurance companies might misuse a person's genetic information must be addressed by legislation.

Do you think the DTC market would be safer with regulation or would this stifle scientific innovation?

I am all for some kind of oversight — just like most industries. The basic accuracy of tests should not be in question and additionally, the whole industry would benefit from some kind of oversight that could weed out companies making wild and untrue claims about their tests. It's in no ones interest to get a reputation as a wild west. On the other hand, regulation should not be overly heavy, slow and expensive — that would stifle innovation. What do you think about the science of human leukocyte antigen (HLA)-typing behind genetic matchmaking services? What did you find when you took the test?

As I make clear in the book, the HLA-connection to mate preference is very unclear. Indicated by some research but in no way validated. When I have myself and two men - my actual partner and a colleague of mine — tested, it turns out my colleague who I've never been attracted to is the ideal partner. The reason I include this test is to show where we are heading. It is a sign of the times that there is a viable business here and that consumers seek out this service — it shows that they are already thinking about genetics in relation to something as deeply personal and important to life as romantic partnership.

What were the most worrying claims made by DTC genetic testing companies you found in the course of your research? Which were the most promising?

I found a horrendous example of right out fraud in a company that claims to test your child for 40 genetic variants and on that basis give you a guide to how you should bring up this child. What extracurricular activities to have the kid do and what sort of career choice he or she should make. Completely rediculous. That is the sort of consumer 'genomics' that should be weeded out by an oversight or control authority.

Were you satisfied that the scientific evidence provided on DTC genetic testing company websites justified their claims?

I must say I haven't done a comparative analysis of different companies. However, the scientific papers behind a range of the SNP markers used by deCODEme (the company I used for a SNP profile) and their connection to disease risk have seemed sound to me. After all, deCODE genetics is a highly reputable research institution whose publications on genes and disease risk have come out in the best journals.

Finally, do you think it useful or acceptable that parents discover genetic knowledge about their children at a young age?

 This is one of the questions I find it most difficult to have a firm opinion on. You can imagine a negative impact of parents being over protective because of insight into psychological sensitivity for example. But you can likewise imagine positive examples of parents learning about a serious disease risk and acting upon it preventively. My final analysis would be that the possible advantages probably outweigh the possible drawbacks. After all, our parents and our childhoods don't determine our lives.

Related Articles

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
15 January 2013 • 3 minutes read

Report Review: Consumer Genetic Testing

by Ruth Saunders

Last week the Parliamentary Office of Science and Technology (POST) released a POST Note - a guide for MPs and other parliamentarians on science and technology issues - on consumer genetic testing...

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
6 December 2012 • 4 minutes read

Book Review: My Beautiful Genome - Exposing Our Genetic Future One Quirk at a Time

by Emma King

My Beautiful Genome is the story of DNA told through one woman's quest to find out if the secret to her depression lies in her genes...

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
12 November 2012 • 2 minutes read

Direct-to-consumer genetic test results are questionable, research suggests

by Rosemary Paxman

Direct-to-consumer (DTC) genetic tests provide an inaccurate prediction of disease risk and offer little benefit to consumers, scientists claim...

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
11 October 2012 • 1 minute read

Survey suggests that Americans are willing to pay a premium for genetic tests

by Rosie Beauchamp

A recent study suggests American consumers would be prepared to pay on average up to $600 for a predictive genetic test where no direct treatment is available....

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
4 October 2012 • 4 minutes read

Book Review: The Genome Book - A Must-Have Guide to Your DNA for Maximum Health

by Marianne Kennedy

Genetics is creating more confusion than the offside rule in pub conversation. Most of us had limited teaching on the subject at school or we may have left before Watson and Crick ran out of the pub that night with the structure of DNA on a beer mat. We are left to soak in the media murkiness and skewed views of individuals, which could one day influence important decisions on our health....

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
18 October 2010 • 2 minutes read

Scientists put their personal genotyped data online

by Ken Hanscombe

Twelve members of the Genomes Unzipped project have made their personal genetic data publicly available online. By sharing their genetic data, the project aims to guide discussion about the risks, benefits, and limitations of genetic information, and the issue of genetic privacy...

Leave a Reply Cancel reply

You must be logged in to post a comment.

« If it ain't broke, don't fix it: why the HFEA should leave the gamete donation policy alone

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
8 August 2022 • 2 minutes read

FILM: 200 Years of Mendel – From Peas to Personalised Medicine

1 August 2022 • 4 minutes read

Women's Health Strategy plans reflect rising needs of same-sex female couples

25 July 2022 • 4 minutes read

Was the Women's Health Strategy worth the wait?

25 July 2022 • 4 minutes read

Why the UK should extend the 14-day rule to 28 days

25 July 2022 • 5 minutes read

200 Years of Mendel: From Peas to Personalised Medicine

8 August 2022 • 4 minutes read

Citizenship and same-sex parents – about time, Sweden!

8 August 2022 • 2 minutes read

FILM: 200 Years of Mendel – From Peas to Personalised Medicine

1 August 2022 • 4 minutes read

Women's Health Strategy plans reflect rising needs of same-sex female couples

25 July 2022 • 4 minutes read

Was the Women's Health Strategy worth the wait?

25 July 2022 • 4 minutes read

Why the UK should extend the 14-day rule to 28 days

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