Frequently asked questions
We are gaining more and more knowledge about the genetic basis of human traits, characteristics and disorders. This has made it possible to adjust hereditary disorders or traits at the time of conception. This adaptation of the hereditary DNA of (newly created) embryos or of egg or sperm cells, with which fertilization can be achieved, is called germline modification.
Because germline cells contain the hereditary DNA that is passed on to offspring, adapting those cells has consequences not only for the child that grows out of the embryo, but also for the children of the "modified" person.
In The Netherlands, research into the genetic adaptation of newly created human embryos is not possible because the special creation of embryos for research is prohibited. It is also prohibited to initiate a pregnancy with germ cells or embryos of which the DNA has been altered.
Starting a pregnancy with germ cells or embryos with altered DNA is currently prohibited in the Netherlands, as stated in the Embryo Act. In 2016, Minister Edith Schippers of VWS argued for regulating instead of prohibiting germline modification. The current government, however, wants a social dialogue before any possible change in the law takes place. This dialogue takes place to allow Dutch society to form an opinion about research into and the application of germline modification. The outcomes of the dialogue can then be used in political decision-making.
In this dialogue, there must be sufficient room for the ethical questions that play a role in germline modification. Adapting the DNA of future people raises questions about the rights, freedom, dignity and identity of individuals, society and all of humanity. Questions about respect for (starting) human life also play a role. It is, therefore, important that we as a society discuss what we do and do not consider acceptable and desirable.
The Rathenau Instituut has years of experience with social dialogues about (emerging) technology that can have a major impact on society.
Social dialogues are held to involve a broad audience in complex issues. Citizens need to be informed and encouraged to think about the broad social consequences of a technology, so that they can exchange views with each other and form an opinion together. Conducting such a social dialogue is not easy. Therefore, based on experience and based on this research, the Rathenau Instituut has formulated a number of points for attention, divided into five lessons for the content and five lessons for the form of the germline modification dialogue.
In the future, germline modification could be used to eliminate the genetic predisposition for certain serious hereditary diseases. This would give parents the opportunity to not pass on their genetic predisposition to their future children. In addition to the fact that the safety of these techniques has not yet been proven, the adaptation of hereditary DNA in humans can have all kinds of social consequences, both for the current generation and for future generations.
For example, in the current social debate, concerns are expressed that human reproduction can change into human production, whereby conscious choices can be made for the characteristics of future children, and even for the composition of future populations. In addition, germline modification could have major consequences for social relationships.
Firstly, the availability and affordability of the treatment can ensure that it is only accessible to people who can afford it. This can reinforce existing socio-economic differences.
In addition, concerns are expressed about the stigmatization of people with hereditary disorders and the relationship between parents and children can change profoundly, due to the choices that parents can make about the characteristics of their children. When it comes to the level of humanity as a whole, adapting DNA - also seen as our human core - raises questions about identity and our humanity.
De maatschappelijke dialoog over kiembaanmodificatie is een initiatief van:
- Erfocentrum (penvoerder)
- Erasmus MC, Rathenau Instituut
- NPV Zorg voor het Leven
- NEMO Kennislink
Diverse andere organisaties verzorgen als partner één of meerdere activiteiten in het project:
- Amsterdam UMC
- Centrum voor Media en Gezondheid
- Nederlandse Associatie voor Community Genetics and Genomics (NACGG)
- Rijksinstituut voor Volksgezondheid en Milieu (RIVM)
- Vereniging Klinische Genetica Nederland (VKGN)
- Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP).
Minister de Jonge omarmde eind 2018 het initiatief uit het veld en het ministerie van Volksgezondheid, Welzijn en Sport financiert het tweejarige project ‘Maatschappelijke dialoog over kiembaanmodificatie’.
De kick-off van de dialogen is op 9 oktober 2019. Eind 2020 brengt het Rathenau Instituut in samenwerking met bovengenoemde organisaties een rapport uit over de uitkomsten van de gevoerde dialogen. Zie ook:
The social dialogue about germline modification is an initiative of:
- Erfocentrum (secretary)
- Erasmus MC,
- Rathenau Institute
- NPV Care for Life
- NEMO Knowledge Link
Various other organizations take care of one or more activities in the project as a partner:
- Amsterdam UMC
- Center for Media and Health
- Dutch Association for Community Genetics and Genomics (NACGG)
- National Institute for Public Health and the Environment (RIVM)
- Dutch Clinical Genetics Association (VKGN)
- Association of Cooperating Parent and Patient Organizations (VSOP).
At the end of 2018, minister de Jonge embraced the initiative and the Ministry of Health, Welfare and Sport finances the two-year project "Social dialogue on germline modification".
The kick-off of the dialogues is on 9 October 2019. At the end of 2020, the Rathenau Institute, in collaboration with the aforementioned organizations, will publish a report on the outcomes of the dialogues conducted. Also see: New initiative for discussion about adapting DNA in embryos www.dnadialoog.nl
Future scenarios can help you think about the possible consequences of germline modification for society and the individual, by making them concrete and transparent. Conversely, it is also good to first think about the future society in which we want to live, and then discuss the role that adapting hereditary human DNA can play in this. The Rathenau Instituut therefore developed four future scenarios for use in social dialogue.
These scenarios are not intended as a forecast for the future, but can help people to form an opinion more easily. They differ from each other on two points: how the culture surrounding reproduction will develop and how quickly the technology for adapting hereditary DNA will develop.