Q&A - The DNA dialogue explained

In recent years, scientists have developed many new techniques that make it easier and cheaper to modify the DNA of plants, animals and people. All over the world discussions arise about what these techniques should be used for. One application that raises many ethical and societal questions is the modification of the DNA of future humans. From a medical point of view, this can have advantages: you could repair the predisposition for a serious hereditary disease in the DNA of an embryo, so that the person growing from this embryo will not have this disease.

Both in the Netherlands and abroad, it is currently legally prohibited to place a genetically modified embryo in a uterus (and thus let it grow into a person). In the Netherlands and many other countries, researchers are also not allowed to create embryos in a lab for research purposes. As a result, the only way to conduct research into the modification of embryo DNA is to use surplus embryos from IVF treatment. However, according to scientists, these surplus embryos are less suitable for this kind of research. Because of rapid scientific developments, this legislation is now under discussion: do we want to stick to the total ban on editing the DNA of future humans, or do we want to allow this (in the long run) for certain applications, such as the prevention of serious hereditary diseases? And do we want to give more leeway to research on the safety and accuracy of editing embryo DNA?

How we as a society want to deal with these new possibilities is a difficult and multi-faceted question. It affects, among other things, the way we deal with diseases and each other, and important choices in reproduction and pregnancy. These questions concern us all and must be carefully weighed. Scientists, doctors and politicians are not the only stakeholders in this discussion. Therefore, within the DNA Dialogue, a diverse audience was given the opportunity to gain knowledge, form opinions, and exchange perspectives and arguments.

By genetically modifying an embryo in the laboratory and then placing it in the uterus of the (surrogate) mother, a new human being develops who carries these modifications in all the cells of his or her body, including egg cells or sperm cells. Consequently, he or she will pass on these genetic modifications to his or her eventual descendants (and they, in turn, will pass them on to their descendants).

This form of genetic modification is also known as germline modification. With this technique, hereditary characteristics of a future person can be modified, for example, the predisposition for an inherited disorder.

The DNA dialogue is the name of a two-year project (2019-2021) in which a group of organisations planned a variety of activities and developed information materials to ensure that as many people as possible would participate in the discussion about editing the DNA of embryos. At the end of 2018, the Ministry of Health, Welfare and Sport awarded a grant to this project.

The aim of the DNA Dialogue was to involve various (groups of) people in this discussion to share their concerns, questions, perspectives and considerations and in this way stimulate a process of 'collective opinion forming'.

The DNA Dialogue was organised by a diverse group of organisations, each involved based on their own expertise and interest.

 The initiators of the project were:

• Erfocentrum - the Dutch National Information Center on Heredity (coordinator)
• The department for clinical genetics at the Erasmus Medical Center
• Rathenau Instituut
• NPV - Zorg voor het Leven
• NEMO Kennislink

Various other organisations contributed to the project or had an advisory role:

• The section Community Genetics & Public Health Genomics and the Center for Reproductive Medicine at Amsterdam UMC
• Center for Media and Health (CMG)
• Dutch Association for Community Genetics and Public Health Genomics (NACGG)
• National Institute for Public Health and the Environment (RIVM)
• Dutch Clinical Genetics Society (VKGN)
• Patient Alliance for Rare and Genetic Diseases (VSOP)

From October 2019 to October 2020, 27 dialogues took place within the project, in various forms, for various groups, across the country and online. Due to restrictions because of the coronavirus, after March 2020 a number of dialogues were held in an adapted form – physical dialogues with smaller groups, online dialogues and hybrid dialogues with both physical and online participants.

In the dialogues, participants received information and shared their considerations, concerns and questions, in order to form an opinion about the acceptability of adapting embryo DNA.

In addition, several studies were conducted within the DNA dialogue. The aim of these studies was to learn more about the opinion of the Dutch population on the subject of germline modification, and about the online discussion on this subject. Furthermore, legal- and safety issues surrounding the (possible) introduction of such techniques into clinical practice were also investigated, as well as  the choices involved in financing these techniques.

In addition, a number of tools were developed to inform participants and get the discussion going. These include animations of future scenarios and various educational packages for primary and secondary schools. On top of that, 56 (online) articles and 15 other products, such as videos, have been published within the DNA dialogue.

In the final report of this project (available in Dutch), we describe the issues, concerns and questions raised by participants of the dialogues. We have broken these down into six main themes, each with a central question:

1. Do we want to modify embryo DNA and if so, for what purpose?
2. How should we shape the clinical practice in which the editing of embryo DNA is embedded?
3. What are the risks associated with editing embryo DNA and how do we deal with them?
4. Which organisational and ethical issues are connected to basic and clinical research on editing embryo DNA?
5. What consequences could the clinical application of editing embryo DNA have for society?
6. What notions of the good life, reproduction and parenthood exist in relation to editing embryo DNA?

This variety of themes illustrates that participants of the DNA dialogue formed their opinions based on various considerations and perspectives.

In general, participants of the DNA dialogue are not fundamentally opposed to the modification of the DNA of future persons. This does not mean, however, that they are automatically in favour of it: they consider it acceptable or desirable only if it is applied for very specific purposes (only to prevent serious hereditary diseases) and under strict conditions.

Participants fear that important (societal) values, such as autonomy, accessibility of care for people with a disorder, diversity, acceptance of differences and non-discrimination would be threatened if DNA modification were allowed. It is important to them that these values are preserved.

They also consider it important that in the future, people who want to have children can make a free, well-considered choice whether or not to use these techniques. They fear that prospective parents may experience societal pressure to edit the DNA of their future children. In addition, they highly value the safety of clinical applications, about which there is still much scientific uncertainty.

There is also a significant group of participants (often with Christian backgrounds) who find it unacceptable to use human embryos in research on the safety and effectiveness of modifying the DNA of future persons.

A full description of the outcomes of the dialogues can be found in the final report and in the article ‘The DNA-Dialogue: A Broad Societal Dialogue About Human Germline Genome Editing in the Netherlands’, that was published in The CRISPR Journal.

The results of the DNA dialogue give policymakers, scientists, doctors, patients, dialogue participants and other citizens insight into the issues surrounding the modification of embryo DNA and how people in the Netherlands think about it. In this way, they contribute to the forming of opinions and the formation of duly considered policy.

On 25 January 2021, the final report of the project was presented to the Minister of Health, Welfare and Sport. The insights will be used in the political discussion on possible amendments to the Dutch Embryo Act, which determines whether further research into the effectiveness and safety of editing embryo DNA is allowed, as well as its application in clinical practice. Patients, scientists, medical professional groups and wider society will need to further discuss whether it is possible and desirable to embed the modification of embryo DNA in clinical practice. In doing so, they will have to take into account the important lessons that this report provides.