UCL workshop on "Personal Genetic Testing: Challenges, Pitfalls, and Benefits in and Beyond the Clinic"

The front entrance of UCL. Photo by Neil Turner.
Originally published on Flickr under a Creative Commons Licence.

We are hosting a workshop at University College London (UCL) on 27th June on “Personal Genetic Testing: Challenges, Pitfalls, and Benefits in and Beyond the Clinic”

It will take place between 09.45 and 19.30 at the UCL Anthropology Department, 14 Taviton Street, London.

The event is free to attend but there are only a limited number of spaces at the venue so if you are interested in coming along make sure you register at EventBrite:

https://www.eventbrite.co.uk/e/personal-genetic-testing-challenges-and-benefits-in-and-beyond-the-clinic-tickets-34145019673

Here is the timetable for the meeting:

09.45. Welcome

10.00. Keynote Speech: Genetics and Identity - Adam Rutherford (BBC)

11.00-11.20. ~ Coffee Break ~

11.20. Science of Ancestry Testing, Focus Group - Garrett Hellenthal (UCL), Debbie Kennett (UCL), Turi King (University of Leicester), David Nicholson (Living DNA), Mike Mulligan (AncestryDNA), Mark Thomas (Moderator, UCL)

12.20-13.30. ~ Lunch ~

13.30. Ethical Issues in Personal Genetic Testing, Panel - Ernesto Schwartz-Marin (Durham University), Speaker TBC, Matthias Wienroth (Moderator, Northumbria University)

14.30. Social Science Perspectives on Personal Genetic Testing and Identity, Panel - Catherine Nash (Queen Mary University), Speaker TBC, Sahra Gibbon (Moderator, UCL)

15.30-16.00. ~ Coffee break ~

16.00. Security and Privacy Challenges in Genomics, Tutorial - Emiliano De Cristofaro (UCL)

17.00. Medical and Research Aspects of Personal Genetic Testing, Short Talks - Stephen Beck (UCL), David Bentley (Illumina), Joyce Harper (UCL, moderator)

18.00. Reception

Please note that the agenda may change and will be confirmed a few days before the event as we are still finalising some invitations. Please check the Eventbrite page for updates.

Abstract
The rapid growth of the Personal Genetic Testing (PGT) market raises a number of important scientific, ethical, legal and social concerns, including data security, privacy, and identity, as well as issues around the accuracy, utility, and communication of inferences regarding ancestry, biological predispositions, disease vulnerability, and the sharing of personal data with third parties.

At the same time, PGT has great potential value to individuals and healthcare providers. Realising this potential requires evidence-based standards for translating commercial genetic testing data into actionable medical information, and educating clinicians and the public on what can and cannot be inferred from personal genomes.

Sponsored by the UCL Grand Challenges Initiative, this workshop aims at establishing a highly interdisciplinary, highly engaged UK-based community of researchers and practitioners that are eager to tackle the various challenges associated with personal genetic testing and inform policymakers, clinicians, and companies.

A new exome sequencing and interpretation service from Belgian company Gentle Labs

While the spotlight has been very much on 23andMe and the FDA this last week the launch of a new high-end genomics service has attracted little attention. Gentle Labs is a new company based in Belgium. They are offering an exome sequencing service with interpretation for $1990. The results are provided through a doctor. This is from their FAQs:

Why would I pay $1990 if I can get my DNA sequenced for $99?        Some companies are offering 'insights into your DNA' for only $99. These tests, however, are only based on 0.03% of your genome (corresponding with 1.9 % of your genes). It's like reading a novel by reading a letter on every page: you won't get much of the story. These cheaper tests do not allow for accurate or complete results or interpretation: some of these tests have false negative rates of 50% or more! In fact, companies offering these tests admit this themselves. One company clearly displays on their website that "The information on this page is intended for research and educational purposes only, and is not for diagnostic use." In other words: these tests should not be relied on for any medical purposes, nor for diagnostic use.
   
        In contrast, our Gentle test not only offers complete coverage of all your genes, it also includes counseling with some of the world's best medical geneticists provided by Royal Doctors. Other advantages include:
        *       a free subscription service through which we will keep you informed about your DNA as science evolves
        *       free DNA data storage (so that you can provide your medical doctors access to your DNA data in case of a health issue or emergency)
        *       user friendly iPad and web apps to explore your genetic results and - in the end - yourself

The Royal Doctors have no connection with royalty but offer a network of doctors who will provide advice for a fee of one Euro per day. Their website can be found at www.royaldoctors.com 

Dr. Bertalan Meskó, who writes the Science Roll blog, has signed up for the Gentle service and has published an interview with Peter Schols, the CEO of Gentle Labs, which can be found here.

The launch of Gentle Labs was covered by GenomeWeb but the story is behind a paywall.

Interestingly 23andMe launched their own exome sequencing pilot programme back in 2011. Exome sequencing is the logical next step for personal genomics tests but the costs are still prohibitively high for the average consumer. It will be interesting to see what transpires in the next five years.

© Debbie Kennett