Study participants

Participants’ demographic and condition-specific characteristics are summarized in Table 1. A majority of the 38 participants were female and atheist. Most participants had a genetic condition (56%). Participants brought in experiences with a wide range of genetic conditions, 18 in total. Approximately 30% of the participants had experiences with Fragile X syndrome.

Table 1 Participants’ demographic and condition-specific characteristicsaResults of interviews and focus groups

The results of the interviews and focus groups are presented together since the themes were mostly overlapping. In the thematic analysis three main themes were identified: personal deliberation on HGGE, HGGE in the context of reproductive decision making and the impact of HGGE on society. The results are sorted accordingly. In the final part of this section, we will present the results of the evaluation. As mentioned in the introduction, we use the term genetic conditions to refer to both heritable diseases as heritable conditions that can cause disability (as defined by the WHO (2023)). However, in this section we use the terms used by the participants.

Figure 1 provides an overview of the themes and their relationships within the deliberations on HGGE. We identified a pattern in the participants’ considerations. First, they reflected on the role of the genetic condition in their lives, weighing whether it felt more like a burden or part of their identity. When seen as a burden, participants discussed coping with the suffering it caused. When viewed as part of their identity, they considered whether to shield their children from potential suffering or accept the condition as part of their child’s identity. The thought of"preventing suffering where possible"led to reflections on the proportionality of HGGE, while other considerations questioned life’s malleability and valued diversity.

Fig. 1

Overview of themes and how they relate to each other within deliberations on HGGE. Themes are displayed in Bold. Important to note is that the arrows indicate possible ways of thinking; the deliberations did not yield definitive answers. Instead, the process can be viewed as an ongoing weighing of values, leading to nuanced responses along a continuum. RDM = reproductive decision making. ART = assisted reproductive techniques

Personal deliberation on HGGEBurden of genetic condition

During this consideration, some participants expressed sorrow over their symptoms or over the burden of their condition. Participants talked for example about the burden of having regular medical examinations, of hospital visits and of the school or work absenteeism due to their condition.

“With my disease, having all the examinations… Look, they call cancer not without reason a silent killer, you are carrying a time bomb within you, you don’t know it, you don’t feel it, only by screening you know if something is growing or not. That stress… If you could take that away, you should. All these medical procedures and this tension… It’s almost inhumane.” – Individual with a genetic condition (I)

“I’ve been in the hospital so many times… If you could be spared that… You can perform so much better in every way, going to school or whatever… It has been a true obstacle.” – I

[Other participant: do you think this feeling of guilt is part of your condition?]

“[...] I’ve been working on Neuro-Linguistic Programming, a combination of techniques to get to know oneself better etcetera. And having a hereditary condition strongly resurfaces in key moments of my life. The feeling of guilt is part of it... It’s not only the physical part, definitely not” - I

At the same time, participants showed that their attitude to life is highly influenced by their condition and how to deal with it. For example, some participants stated they could deal with setbacks and losing control better than their friends and family due to their lived experience.

“Imagine I didn’t have this illness. That has both positive and negative consequences. Like, yes, the illness has made me very strong in certain aspects... including coping. How do I deal with this? A part of... putting events into perspective. A part of... empathy towards people with illnesses, with medical difficulties. In that sense, it has definitely given me a lot. On the other hand… [...] It can remove so much crap from... from someone’s life. And not just physically. [Other focus group participant: “I can see that it affects you, so…”] Absolutely, also mentally.” - I

Genetic condition as part of identity

To some participants, their genetic condition was part of their identity or at least something their identity was highly influenced by. For these participants, the idea that people would prevent children with their genetic condition from being born, made them feel as if they should not be here or as if they were valued less than others.

“If someone would have done that [HGGE] to me, I would feel like being less or inferior than others.” – I.

However, to some, HGGE did feel better than PGT, if it would not require selection.

“HGGE feels much better. If my parents had chosen for PGT, I wasn’t born, although I think my life is totally worth it, I live a very good and happy life, and that opportunity would be denied using PGT.” – I

Genetic condition in the context of families

The deliberation on HGGE made participants reflect not only on the impact of their genetic condition on themselves, but also on their family. Some felt guilty, viewing themselves as a burden to relatives or for passing the condition to their children. This guilt was interwoven with sorrow over seeing their child bearing the burden of the genetic condition. Sometimes these feelings were expressed in the form of hope: hope to be able to prevent their offspring from having the condition.

“Well, I have this feeling of guilt, you know there will be difficulties in the future, I see it in my children. I’m starting to go through menopause, I’m getting old and I’m ailing more and more, and that also adds to their responsibility, especially because they know they have the same condition. What’s their vision for the future?” – I

“Looking at my own disease, the idea that I could spare my child that and all the generations to come, that’s a winning lottery ticket, I can’t say otherwise.” – I

“When gene therapy is available for him, he won’t need infusions and that kind of stuff anymore. But that doesn’t mean that his children… No, then I think it’s even more important for him, the HGGE. […] For future generations.” – Carrier of a genetic condition (C), parent of individual with a genetic condition (P)

Conversely, some participants noted that having a genetic condition can strengthen family bonds through shared care for the affected family member. Some participants also mentioned that having the same genetic condition can cause some form of mutual understanding within the parent–child relationship, since both the parent and the child know what it is like to live with a genetic.

“Five years ago, we were really going through a difficult period. And far too often, in my opinion, people want the easy way out with everything, and um, I have to say that through that tough time, it greatly strengthened our relationship, my relationship with my two sons, not just with X [son with genetic condition], tremendously. And it created a unique situation that I’m very happy about and proud of. My little son Y [son without genetic condition] feels the same way. As for X, I can’t get that from him; he doesn’t have the cognitive abilities to express himself on these kinds of matters. So... so I think that when things happen in life and you deal with them, it also strengthens relationships.” – P

Social comparison

When talking about HGGE, the subject of the deliberation mattered: whom are we talking about? Participants valued HGGE’s potential differently for different individuals. Participants with a genetic condition often contrasted their own condition or situation with other conditions and situations that they thought of as more severe or worse, weighing the expected degree of suffering up against their own experiences. Because of this, some participants with a genetic condition seemed to be more reluctant in potential applications of HGGE, compared to family members who see a potential to improve the quality of life of their affected family member.

“Do you watch ‘Over mijn lijk’ [a Dutch TV program about adolescents with incurable cancer]? […] I know you’re actually not allowed to compare yourself with people who suffer more, but after watching an episode, I’m always so thankful for my health and life.” – I

“I visit the Erasmus MC [Medical hospital in Rotterdam, the Netherlands] often, and during those visits I see parents with children, that makes me think oh how terrible, how bad, my condition is nothing compared to that, I’m still able to walk, I can have a good day tomorrow… If you could do anything about that, I think that’s even more valuable than for myself.” – I

HGGE in the context of reproductive decision making

In the context of reproductive decision-making, participants with a genetic condition often made different considerations for their children than for themselves. Some, though content with their own lives, wished to prevent their children from facing the challenges accompanied by having a genetic condition. Others believed that since they lived happily with the condition, their children could too. In case participants wanted to prevent passing on the genetic condition, they thought about the proportionality of HGGE (Fig. 1). What are the potential risks and benefits, and how do these relate?

Responsibility of making a reproductive decision

In the hypothetical scenario that HGGE is available to prevent genetic conditions, many participants agreed that this technique could have large consequences for families, especially on reproduction. Due to the availability of HGGE and other assisted reproductive technologies, participants agreed that prospective parents are now forced to make a decision on this matter; doing nothing is a choice too. As a consequence, prospective parents might feel a huge responsibility to make the right reproductive decision.

"Especially because you have that responsibility, I feel that we should also be able to have this conversation, so to speak, because it concerns our lives. It affects my parenthood… and my love for my child, it also has an impact on that."- I

Some participants were afraid that this responsibility was too large to carry. One participant thought this decision was not for the parents to make, since children should be free to develop their own point of view on this matter within their right to an open future.

“If I imagine that there had been an intervention in my DNA while I was still in the womb, then, for me, it would have actually felt like someone was breaking the road there. As I’m driving, I descend to earth, and I think, I’m going to start my path, I’ve picked out a set of genes for that and I’m completely ready for it. And darn it, someone is just cutting and pasting there! So, my own path is already being drastically altered before I even have the chance to tread the path and make it my own.” - I

The malleability of life as a virtue?

Many participants questioned the malleability of life as a virtue. On the one hand, participants thought it is good to prevent people from suffering by preventing some genetic conditions from being passed on to next generations. On the other hand, participants doubted if this amount of control over one’s life is actually beneficial. The more control people pretend to have over their lives, the less resilient to unexpected setbacks they will become. One participant also mentioned that having a genetic condition could be seen as one of the many setbacks in life, indicating that it is not the only factor that determines how someone will live his or her life.

“Passing judgment on a life based on the presence of a hereditary condition feels too narrow to me. So, I think there are all sorts of factors that shape a life. A handicap or illness can be just one factor among a multitude of factors. And I don’t believe it’s a crucial determining factor in her [her daughter’s] happiness or unhappiness. Unless she fixates on it blindly. But even that would be her own thing. So, the idea that this one little thing is going to make or break her life, I can’t embrace that. I can’t feel that.” – I

"I think we live in a very engineered society where we want to have control over everything, and, um, I think because I have this, because I have [disease X] and thus don’t have control over it, I feel very distant from that. I have a lot of friends around me who are fortunately completely healthy, but they are all real control freaks, and I am just not like that because I know what it’s like to completely lose control over your life. So, um, I think if we implement this [HGGE], and it becomes an option to determine traits for a future child, um, yes, I think that will only have a negative effect, really. Yes. And, um, I think this will also decrease society’s resilience, because if you are so capable of controlling everything in your life, if you do encounter a setback, you really can’t handle it at all."– I

Parent–child relationship

In addition, many participants thought that HGGE will have consequences for the parent–child relationship. For example, some participants were worried the parent’s unconditional love for a child might be affected when parents have too high expectations due to the use of HGGE. However, some participants thought HGGE is better than PGT in this concern, since it may not involve selection.

“Using PGT, you’re actually saying OK, we want a child, but if the embryo is affected, we don’t want it to grow, we abort it, we only let it grow if it’s unaffected. […] Using HGGE, it feels more like, a child is coming, we don’t know how, but it will come.” – I

Impact of undergoing assisted reproductive techniques

Moreover, some participants were worried about the impact of the procedure of HGGE on prospective parents; not only physically on the woman who has to undergo the IVF-procedure, but also emotionally. Special attention was given to the value of embryos and what it means to be the “owner” of embryos that are leftovers after the procedure.

“I immediately think of the two healthy embryos, her sisters or brothers, that are in a freezer in Utrecht. And I have no idea what I should do with them. [...] I’ve just had two days of working with a family constellation, [...] and actually, these are all... places in the system that remain empty. They really are. So now I also realize that those potential brothers and sisters, let me just say it, they don’t appear in that [family constellation]. [...] So, that’s basically the conclusion for me, that altering DNA also has far-reaching consequences beyond just the ethical aspect of whether I’m allowed to manipulate DNA or not, whether I can tamper with life, with the structure of life. It carries many disadvantages in terms of emotions, guilt feelings, and indeed the remnants of the process that remain.” - I

Impact of HGGE on society

Lastly, participants hypothesized what impact HGGE could have on society and societal values.

(Acceptance of) diversity

First of all, many participants mentioned the value of diversity. They thought it is important that everyone in society is accepted as they are. When genetic conditions could be prevented by the use of HGGE, participants feared that the acceptance of people with a genetic condition in society would decrease.

“I think it is very important that people are accepted within society. It terrifies me thinking about a society that will judge you because you’re different from others, that you are the exception, and I think that when you can use HGGE for medical reasons, these social aspects won’t get enough attention.” – I

Freedom of choice

Furthermore, participants highly valued the freedom of choice to use HGGE for the prospective parents. Almost all participants indicated that this choice is very personal and that they had difficulties with determining this choice for others. Moreover, they stated that this choice should never be influenced by financial pressure, government interference or societal pressure.

“I can’t look in someone’s head, I don’t know what it’s like to be deaf, or to have Down syndrome, so I can’t decide for them.” – I

“And I believe that each person should decide whether they make a decision. Will I alter it or not? And I simply have respect for everyone. Because it’s each individual’s choice, each individual’s perception. And I think you shouldn’t call someone out or attack them for that. No, it’s a conscious choice a parent makes.” – I

Evaluation

After the interviews, participants explicitly stated the topic is controversial, complicated and overwhelming.

“Geez, that’s quite a story… […] Well, for now, I’m completely empty. I think I’m going home, or actually, I think I will visit the McDonalds for a simple burger, so I’m able to quietly rethink everything we talked about, nice and simple.” – P who participated in an interview

"Yeah, I know plenty who just don’t feel like thinking about something like this. It’s scary and confronting and yucky, and they don’t immediately benefit from it themselves. My own family, for example... way too scary, these kinds of topics. My mother feels guilty about my condition, and talking about it is really hardly feasible, it’s way too scary for her. Even ten years after the diagnosis..."– I who participated in an interview

“[The topic is] definitely burdensome and personal. I was able to incorporate it into the systemic therapy I was doing at the time. It’s really something fundamental, you could say.” – I who participated in a focus group

Participants of the focus groups stated that they looked back on a special and impressive afternoon. They valued the small group setting with peers. Recognition and mutual understanding helped them to learn from each other’s perspective.

“[Due to the focus group I realized that you have to have] respect for everyone, for each person’s standpoint. This subject is so personal, it deals with something so profound, you can’t judge someone else about it."– I who participated in a focus group

"It’s not like my opinion has changed or anything, not that, but I have become more aware of other viewpoints regarding germ line modification. It’s very interesting to hear directly from someone who DOESN’T want it. You do get a kind of perspective development during a dialogue."– I who participated in a focus group

Lastly, participants stated that Photovoice helped them to express their feelings.

"I also found the Photovoice assignment very effective. At first, I really thought it was quite difficult, but later on, an image came to mind quite quickly. It helped me not only to reason but also to feel."– I who participated in a focus group