There are five years and six IVF treatments between the first and second daughter of Member of Parliament Jan Paternotte (D66). That period was physically and mentally difficult, he says, especially for his wife. “These are intense treatments: endless injections, frequent blood tests, many medications with side effects such as headaches and hormone fluctuations, constant hospital appointments and painful punctures. I have been there, and you feel that it is very important that we improve this care. It was a reason for me to work hard on it.” Ideally, says Paternotte, “there would have been two years between the births of my two children. Then my youngest daughter would now be in group 3 and not in daycare.”
Paternotte is now submitting a private member’s bill together with MP Harry Bevers (VVD) to lift the ban on cultivating embryos for scientific research. Goal: increase the chance of success of IVF attempts. Only 25 percent of the treatments are now successful. Three attempts are reimbursed from the basic package up to the age of 43, after which people have to pay for it themselves; that costs thousands of euros each time. Paternotte: “Things often go wrong or it takes years. Or a child’s wish is not fulfilled at all.” Bevers: “It would be nice if a woman needed far fewer IVF attempts in the long term.”
Paternotte mentions a type of glue as an example, embryo gluewhich is offered in the United Kingdom, for example. A substance is then added to the culture fluid in which the embryo is located. This ‘glue’ is said to improve implantation in the uterus. Paternotte: “Then they say: ‘Come to our clinic, we can take care of that for an extra 300 pounds’.” But the question is whether the glue is effective, he says: “It is now difficult for prospective parents to say ‘no’ to that. You don’t want to feel like you’re going to remain childless because you didn’t want to leave that extra £300 on the table. There are many additions to IVF treatment that are offered in this way. Then prospective parents are easy victims of marketing. If we do our own research, we can say: ‘don’t do this now, it’s nonsense’. Or rather: ‘do it’. These are sometimes also treatments that can be harmful to a woman.”
It would be nice if a woman needed far fewer IVF attempts in the long term
You think the research in the UK is not good?
Paternotte: “Examinations and treatments are often private there. A lot of money is made from it. We don’t want that perverse incentive in the Netherlands.”
Bevers: “You cannot control private research. You must ensure that the very high ethical and moral standards that we have here for scientific research also apply to IVF research. We do things differently in the Netherlands. It is public care, largely in university hospitals. This is how people maintain confidence in healthcare. If you have a great desire to have children, then this is the recommended route.”
According to the Embryo Act of 2002, research may now only be conducted on remaining embryos that are not used by prospective parents. But those embryos are three to five days old, which is too old for proper research into the early stages of fertilization, say Paternotte and Bevers. Remarkably, the Embryo Act assumed that the breeding ban would be temporary and would be lifted if there was social support for it. There have been three legal evaluations in recent decades, all three of which concluded that the ban could be scrapped. Yet it didn’t happen.
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Why not?
Paternotte: “For political reasons.”
Bevers: “Because of different cabinets with confessional parties or because the relationship in the House of Representatives was different than in the Senate.”
The question is also whether society wants it.
Paternotte: “We had round table discussions and made working visits. If you tell people what it means, there is a lot of support. Critics are often opposed to the creation of embryos on principle. They also find that difficult for IVF, let alone for scientific research.”
Bevers: “That’s just how it is. We cannot convince that group with the best arguments in the world, because there is often a religious motive behind it; the idea that people should not interfere with the creation of life. We look at it in a much more balanced way. Of course, life is very worthy of protection, but there is also another side.”
Research by the Rathenau Institute in 2019 showed that many people find breeding embryos a sensitive subject. They are also afraid of further steps: tampering with DNA, designer babies. Do you understand that resistance?
Bevers: “Because an IVF process is so difficult, you want to minimize the chance of things going wrong. I think that is only logical. This does not have to do with eliminating certain diseases or abnormalities. For me that is a different discussion.”
Paternotte: “The most important thing about our proposal is improvement of IVF treatments. If that research also provides knowledge about the development of hereditary diseases or chromosome abnormalities, this is an additional advantage. What you do with it next is of course another question. Then it must be considered separately whether you are going to apply that.”
Bevers: “I know someone closely who has a four-year-old child, who probably has another six months before he dies. If you can prevent that, that suffering…”
Aren’t you crossing a line with this?
Paternotte: “No, because there will be strict conditions, for example permission from parents who donate their remaining egg and sperm cells to grow embryos. You have to ask yourself every time: what is the purpose of our research? Can’t we investigate it in another way?”
It can feel like a slippery slope. One step further every time.
Paternotte: “The fact that we have not changed that law in 22 years already indicates that there is no slippery slope. It’s not going that fast. We have never taken a step at this point.”
A country like the United Kingdom is further along in this area, but many other European countries are more cautious. Why should the Netherlands also become a leader?
Paternotte: “We are not going to lead the way at all. In America and England there are many more options, there are private clinics that offer things down to the level of eye color. Then it concerns embryo selection. We don’t want that.”
Bevers: “We don’t want vague clinics here that promise that you will have a child with an IQ of 180. That is of course never possible.”
After former VVD MP Sophie Hermans switched to the cabinet to become Minister of Climate and Green Growth, party colleague Bevers took over the bill from her just before the summer. Bevers still had to fully delve into it, but was soon “sucked into the subject,” he says. Paternotte took him to the Amsterdam UMC. Bevers: “Because of the drive of the people there, you begin to understand what this all means for prospective parents. How great that wish can be.” In the lab he saw how everything went, the department was full of birth announcements. “They said: ‘We are still so happy every time we succeed.’ Very special.”
Now we still have to convince the House of Representatives…
Bevers: “Medical-ethical topics are not black and white. That is also the reason that in most parties MPs can individually decide whether they vote for or against, it is a free matter.”
You’ve probably already figured it out…
Paternotte: “We are convinced that we should have coffee with all MPs. That will be 148 cups of coffee.”
Bevers: “It is a very technical story, so we have to explain it clearly. We must be able to counter the abuses properly.”
And will that work?
Paternotte: “Thanks to the VVD, it was agreed in the main agreement that we have complete freedom to submit this proposal to the House. And at the bottom line, I also think: wanting to help people is not a specifically liberal or specifically conservative issue.”
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