The Council of Europe’s protocol on genetic testing for health purposes* came into force yesterday (Sunday 1 July). The protocol, an addition to the Convention on Human Rights and Biomedicine, lays down rules on the conduct of genetic tests, including direct-to-consumer testing. It specifies the conditions under which tests may be carried out on persons not able to consent, with particular attention to children, and addresses privacy issues and the right to information obtained through genetic testing. It also covers counselling and screening.
The protocol enters into force thanks to its ratification by five Council of Europe member states (Norway, Montenegro, the Republic of Moldova, Slovenia and Portugal). It has also been signed by five others – the Czech Republic, Finland, France, Iceland and Luxembourg. The major push for ratification came from the Czech Presidency of the Council of Europe, following extensive lobbying by the Czech Society of Medical Genetics and Genomics. “It was a major effort on our part,” says Professor Milan Macek, President of the Czech Society, “and we are delighted by the result.”
“At a time when genetics and genomics are advancing so rapidly, issues surrounding genetic testing take on an even greater importance than before,” says ESHG President Professor Gunnar Houge, University of Bergen, Norway. “New technologies and discoveries provide huge potential for the improvement of human health, but alongside that can go the potential for misuse. The ESHG therefore welcomes the Council of Europe protocol and believes that it will be an important factor in ensuring that genetic progress continues to be applied in the most ethical way possible to the benefit of all concerned.”
See the according press release.
We would like to draw special attention to the Educational Resources, which have been excellently put together by Education Commtitee member Edward Tobias.
The website is now also mobile responsive and will provide a much better experience on your mobile device.
We would be interested to know, if you have recently been thoroughly impressed by one or more speakers you have seen at a meeting (obviously outside the ESHG Annual meeting), both in terms of being an excellent speaker and of presenting excellent science.
We look very much forward to receiving your input at your earliest convenience, in order to discuss it at the next SPC meeting end of June, but we will keep the online form open over the whole year and are equally happy to receive a feedback whenever you experienced a great talk at a meeting.
Thank you very much!
It is with sadness that that I heard the announcement of the death of John Sulston this week. Other commentators have remarked on his contribution to the first working draft of the human genome and the clarity with which he argued that this science should be in the public domain.
I had the privilege of beng his colleague on the UK Human Genetics commission. I remember not only his intellect and humanity but also that he was great fun. My time on this Commission was one of the most formative in my professional life and much of that was due to working with colleagues such as John. My sympathies go to his family, friends and colleagues.
His contribution to the science of human genetics should be acknowledged and his personal qualities remembered.
President of the ESHG
The repeal of the law mandating the collection of DNA from all Kuwaiti residents and visitors to the country is good for individuals concerned about their privacy and human rights, and for medical and scientific research in Kuwait and worldwide. The law as proposed would have been ineffectual in its stated purpose – fighting terrorism – and the simple existence of such a database could have been dangerous in the future, for example in the case of hacking or régime change. It could also have dissuaded people from voluntarily donating DNA for research purposes because of uncertainty as to the real purpose of such a collection, with serious consequences for progress in human genetics.
If the law had been brought into force, Kuwait would have been the first country in the world to require the compulsory collection of human DNA samples from all citizens. The Forensic Genetics Policy Initiative report, ‘Establishing Best Practices for Forensic DNA Databases’, published last week, says: "As countries develop legislation to govern DNA databases, it is important that civil society is engaged in the debate about what safeguards are needed to protect human rights."
We congratulate the Emir of Kuwait and the Constitutional Court on their willingness to listen to those expressing concerns about this, and hope that other countries that may be considering going down the same road will take note of this decision.
For immediate release: Thursday 16 March 2017
A Bill that would allow companies to require employees to undergo genetic testing and disclose the results to their employers, or risk having to make health insurance payments of thousands of dollars extra, was recently approved by the US House of Representatives Committee on Education and the Workforce, with all 22 Republicans supporting it and all 17 Democrats opposing.
Genetic tests can predict health risks. In the US, where companies cover significant parts of the health insurance of their employees they may, understandably, want to minimise these risks. In the past, however, decisions on whether or not to undergo genetic testing have been the voluntary choices of individuals. Both the Council of Europe and the US law (Genetic Information and Non-Discrimination Act, GINA) uphold this standpoint.
The European Society of Human Genetics (ESHG) defends the principle that employees should be employed on the basis of their skills and expertise, and not on their future health risks. This Bill has apparently been integrated into the activities related to the revision of the Affordable Care Act, otherwise known as Obama Care. Transparency is needed on the potential decision to discontinue the GINA. The genetic and health information of individuals needs protection,” said Professor Martina Cornel, chair of the ESHG Public and Professional Policy Committee.