The European Society of Human Genetics
is a non-profit organization. Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.
Consultation on germline gene editing – recommendations of ESHG/ESHRE under development
Gene editing is a technique that holds potential for applications in the treatment of genetic diseases. The European Society of Human Reproduction and Embryology (ESHRE) and ESHG together are in the process of developing recommendations especially for reproductive gene editing. In many countries germline interventions have been prohibited, sometimes even accompanied by criminal sanctions. What were the arguments behind this legislation, and do these still apply and are they still considered convincing? If a technique can help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints?
The Public and Professional Policy Committee of ESHG invites the membership to read the drafts of the Background Document and Recommendations, and submit comments before May 8, 2017 to the first author, g.dewert(at)maastrichtuniversity.nl. Similarly, ESHRE members are invited to comment. We hope to discuss more final versions with the Board in Copenhagen, versions which by then potentially will be ready for endorsement.
This workshop is suitable for all professionals in primary care, including general practitioners, community paediatricians, midwives, primary care nurses and those involved in education of primary care professionals.
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. 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.
The submission for the 2017 DNA Day Essay Contest has openend. Submission is possible until April 25, 2017.
Satellite Meeting at ESHG 2017
7th International Workshop on the History of Human Genetics
50 years of Human Genetics in Europe: discoveries, challenges and the foundation of the ESHG
May 26-27, 2017
Submission of Abstracts until January 31, 2017
As someone who has been extensively involved over the years with human genetics across Europe as a whole, as have many UK workers, I have seen how beneficial these links have been, not only for specific research collaborations but in developing medical genetics services. They have also led to many close personal links and friendships.
The recent disastrous (in my view) Brexit decision threatens to jeopardise and even sever at least some of these links...
EURORDIS-Rare Diseases Europe, together with SWAN UK (the support group run by Genetic Alliance UK), the Wilhelm Foundation, Rare Voices Australia (RVA), the Canadian Organization for Rare Disorders (CORD), the Advocacy Service for Rare and Intractable Diseases' stakeholders in Japan (ASrid) and the National Organization for Rare Disorders (NORD) jointly submit a list of recommendations to address the specific needs of patients without a diagnosis urging all stakeholders to recognise undiagnosed patients as a specific population within the rare disease community.
Press release: Geneticists welcome Kuwaiti decision to amend law on compulsory DNA collection
For immediate release: Wednesday 19 October 2016 Responding to the decision of the Emir of Kuwait to request the Kuwaiti Prime Minister to reconsider the scope of the law that would have imposed compulsory DNA testing on all residents as well as visitors to the country, Professor Olaf Horst Rieß, President of the European Society of Human Genetics (ESHG), said:
“This is a wise and responsible decision. The law as originally proposed was disproportionate and likely to be ineffectual in tackling the problem of terrorism, and would have had negative consequences not just for Kuwaiti society, but also for medical science and research.”
Response to the decision of the Kuwaiti Constitutional Court
Responding to the decision of the Kuwaiti Constitutional Court to accept a challenge to the law that imposes compulsory DNA testing on all residents as well as visitors to the country, Professor Olaf Horst Rieß, ESHG President, said:
“We are delighted that the Court has agreed to hear the case against this law, which we regard as a disproportionate and ineffectual response to the problem of terrorism. The collection of DNA from individuals on this scale would constitute an assault on their right to privacy, would not aid in the fight against terrorism, and could also lead to the isolation of Kuwaiti scientific research and researchers. We hope for a positive outcome from the hearing on 21 December.”
Kuwait is the first country in the world to have introduced a law calling for the compulsory DNA testing of all its citizens, and also of all visitors, whatever their reason for entering the country. The ESHG is seriously concerned with the impact of this law on the right to privacy of individuals, and fears the isolation of Kuwaiti scientific research and researchers.
ESHG 2016 - Thanks & on-demand webcast information
The organisers would like to thank the over 3,500 attendees, representing a record attendance at ESHG meetings, as well as over 150 exhibiting companies and institutions and their over 500 representatives and obviously all speakers and poster presenters for making this conference a memorable experience.
You can find the collection of recorded sessions as webcast in our archive.
See the press releases of the European Human Genetics Conference 2016, May 21-24, Barcelona Spain here.
The EuroGentest Committee of the ESHG has developed Guidelines for diagnostic next-generation sequencing published in the European Journal of Human Genetics.
EMA - 2 Calls for collaboration
The European Medicines Agency is launching a consultation to implement the strategic priority of establishing a greater collaboration with Academia.
You are invited to participate to this process by answering a brief questionnaire that also provides space for comments and suggestions.
Please click on the following link to access the questionnaire:
The European Medicines Agency has released for public consultation on ICH guideline on genomic sampling and management of genomic data - Step 3.
The document open for consultation is available by clicking here.
Comments should be provided using this template. The completed comments form should be sent to ICH(at)ema.europa.eu.
A number of ESHG courses have updates on their programme, namely the Spring Course in hereditary cancer genetics, the course Preconception, Preimplantation & Prenatal Testing and the course Basics in Human Genetic Diagnostics. Check them out here.
ESHG makes fellowships available for these courses.
For immediate release
The proposed Regulation on In Vitro Diagnostic Medical Devices (IVDs) negotiations, currently at the stage of tripartite negotiations between the Council (representing Member State governments), the European Parliament, and the European Commission, still risks restricting the rights of patients and doctors to carry out essential genetic testing, says the European Society of Human Genetics (ESHG) today (19 October 2015) in a statement issued by a range of organisations representing geneticists and patients.
After an open consultation on the ethical issues surrounding health databases and biobanks by the World Medical Association (WMA) recently a two day meeting was organized. ESHG responded to the consultation.
We wish to thank almost 2,700 participants and over 145 exhibiting companies and their staff for having attended the ESHG Conference in Glasgow.
We hope to see you in Barcelona in May 2016.
View the following sessions as web-cast:
- Opening Plenary Session - selected talks
- ESHG-ASHG Building Bridges Symposium on "Genetic testing in children"
- Plenary Debate: "Should all geneticists have their genome sequenced?"
- Mendel Lecture
- ESHG Award Lecture
Videos are now available as on-demand download.
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!
ASHG and ESHG Issue Position Statement on Non-Invasive Prenatal Screening
Two of the world’s largest professional societies of human geneticists have issued a joint position statement on the promise and challenges of non-invasive prenatal testing (NIPT), a new procedure to test blood drawn from pregnant mothers for Down syndrome and other chromosomal disorders in the fetus. The document addresses the current scope of and likely future improvements in NIPT technology, ways it may best fit with existing prenatal screening tools and protocols, options and priorities in its implementation, and associated social and ethical issues.
Sequencing technologies generate data on the entire sequence of the human genome for a decreasing price at increasing speed. This has increased the accessibility of using whole-genome sequencing and whole-exome sequencing approaches for analysis in both the research and clinical contexts.
The ESHG has issued recommendations.
This leaflet gives patients information about genetic tests that target many different genes at once. The information may help you to decide whether or not to have the test and help you to understand the results.
Recent amendments to the proposed Regulation on In Vitro Diagnostic Medical Devices (IVDs) currently before the European Parliament will restrict the rights of patients and doctors to carry out essential genetic testing, says the European Society of Human Genetics (ESHG) today (Monday 7 April 2014). Furthermore, an independent legal opinion now shows that the European Union (EU) has no competence to enact the Regulation as amended by the Parliament.
In a letter published in the journal Science on 30 August, Professor Martina Cornel, chair of the Professional and Public Policy Committee of ESHG and colleagues call for restraint in the use of diagnostic testing based on whole-genome sequencing.
The decision by the US Supreme Court to rule that human genes cannot be patented has important implications for patients and for science.