Three themes emerged while performing the analyses: Factual beliefs and moral concerns related to the human embryo; moral positions concerning the use of hESC for medical treatment; and interests related to the use of hESC for medical treatment.
The factual beliefs and moral concerns related to the human embryo
The philosophical question of when human life begins was described as decisive for their opinion for what purposes human embryos should be allowed to be used. It was seen as impossible to reach consensus in society on when life starts. There were different perceptions of the moral status of the embryo. The embryo was described as being a mere lump of cells with the same value as any other cells. During the interviews, participants also likened the embryo to organs and germ cells. The embryo was by some described as having no life. Thus, no life is ended and no one is hurt when embryos are perished. It was also described in terms of what it does not constitute; it was not seen as a child or a human being. One person described that it is no life as the embryo lacks sensation. However, it was also looked at as something special and as potential life. The human embryo was also seen as a resource, a resource that is constantly produced in abound. While some were firm in their perceptions, others showed ambivalence and at times described the human embryo inconsistently. Some explained they would have had a different view on the embryo if the embryo was inside the womb or if it was older.
The embryo was ascribed no certain value and was not seen as something special by some participants.
“Uhm in some way, if I would have had it in, I mean if it was split in two fractions […] a tube of sperm wouldn’t be that exciting.[…] But I am not convinced that it is much more exciting with a tube of eggs, and I am not convinced it is much more exciting if you mix them together. […] It becomes something else along the way, from being implanted and then ,uhm, becomes a fetus, but when it is in the tube. […] The difference is not that dramatic, I mean.” (Participant 17)
Some ascribed the embryo its value based on whether it later will become a human being or not. The embryo was considered to be highly valuable to the couple trying to achieve a pregnancy using them, as the embryo has the potential to become their child. However, when the embryo becomes superfluous, and the couple is not any longer in need of it, its value was described as instrumental or a mean that could be useful for other purposes, such as helping others. The embryo was described as a valuable resource or a material. Some brought up that embryos are discarded all the time and did not consider embryo destruction in itself to be problematic. Embryos are by nature not used and destroyed all the time, and do not need to be protected for their own sake. One person said it is absurd to consider the embryo as human life with human rights. In contrary, the embryo was also seen as something intrinsically special that cannot be likened to a commodity and just thrown away. The potentiality of the human embryo was suggested to entitle the embryo a certain value that justifies questioning whether embryos are to be used for medical treatments or not, from an ethical perspective.
Moral positions concerning the use of hESC for medical treatment
There was a diversity in participants’ moral positions to using embryos for therapy production. It was perceived as a complex and difficult issue that some had never thought of and triggered thoughts and feelings. One person asked herself how much we should inflict on nature. Some had no firm opinion while others were clear on what they thought. More knowledge of the effect of the treatment was important for some to decide what to think. Some thought it should be up to the experts, researchers (with no interest of profit) or legislators to decide whether the embryos should be used for medical purposes or not.
There were negative reactions after learning of the treatment. Some found it initially scary or became upset but these reactions passed away when they realized that cryopreserved embryos, and not fetuses, are used. Others described cautiously negative initial attitudes. There were worries on how the embryos are to be used and handled. One person described it felt wrong destroying an embryo that could have become a human being. Some assigned their negative attitude to it being a new treatment, not having more information about the treatment or always becoming reserved when it comes to new treatments. Not understanding why embryos need to be used made one participant suspicious.
so my first [thought] was that I will not say it was all negative but it was in the negative direction, this feels a bit tricky, what are they going to do with it, what are they after? I don’t understand.
However, the participants were overall positive to the use of hESC for treatment of PD. They found the treatment interesting and exciting and thought it should be used if it could be beneficial and help others. Using surplus embryos for medicinal production was seen as something positive, “natural” or heartwarming, as it increases the utility, compared to discarding them. Also if iPS-cells would be available for treatment. Someone expressed that it was simple and intuitively easy to understand the potential of hESC. A previous receiver of transplants said it would be presumptuous of him not to accept this treatment based on his medical history. Using hESC was described to be unproblematic. One person explained that no one’s integrity is threatened. Another said it was unproblematic to use embryos to repair or reduce damage, but not to improve the human being.
In this case, a person with Parkinson’s has lost something existing, can you replace it in this way I don’t see an ethical problem with it at all…
…I find it harder to accept that you in some way improve nature, but replacing what has been lost is not problematic to me at all.
The participants were positive to receiving treatment with cells coming from embryos themselves, some said they would accept treatment if it was offered to them. They saw the treatment as a potential help to themselves in the future. One participant said he would donate any embryos he had for medical treatment, if he would be able to.
Some thought the effects of hESC and iPS-cells should determine which of the treatments to use. The treatment that is the best should be produced. Meanwhile, some thought only iPS-cells should be used if they are available. They were preferred for avoiding the ethical issues surrounding hESC as cells from the own body could be used, and for iPS-cells being more easily available. Others preferred the use of hESC over iPS-cells. One person said it is preferable to use embryos instead of skin cells from an ethical point of view, as someone is hurt when sampling skin cells. Embryos were perceived as more appropriate based on how they are to be used; the cells have never been specialized, they are not as old, and were believed to have a better effect than iPS-cells.
Interests related to the use of hESC for medical treatment
The participants identified several interests in the matter of using human embryos for producing medicinal therapies. They balanced interests that they identified against each other during the interviews. Their interests not only concerned them as patients but also brought up interests of others.
Interests relating to themselves as patients
The participants described an interest in having a treatment that did not limit an active everyday life, increased their health and gave them a better life with higher quality of life. An easy everyday life was desirable, without any tubes or cords attached to them and not having to take multiple doses of medicines (a) every day. Some described that learning of this therapy gave them hope of a better and longer life for themselves and/or for other patients. Participants hoped for the treatment to be used early on and slowing down the progression of the disease but they also saw it as a potential cure for PD. They hoped undergoing treatment would prolong life and reduce pain, suffering and other PD symptoms. Some were interested in increasing their functions, e.g., cognitive functions, communication abilities, mobility, help relatives and wanted to be more independent in their everyday life. One participant described how he wished he did not have to wake up his wife every night to help him get to the bathroom. Another participant wished for persons with PD to be able to return to normal again. Development of new treatment alternatives and the potential benefit for patients and relatives were used to justify the use of hESC.
The participants expressed a need for having new medical treatments against PD available. Some described that the medicines they have tested so far had no or insufficient effect. The efficacy of the treatment was described as important and there were worries that these treatments would not be efficacious enough.
Patient safety was important to the participants and they worried for side-effects of the treatment. Injecting substances into the brain was perceived as something risky. Some were solely worried about having to undergo a brain surgery, others were concerned about the substance and its short and long-term side-effects.
…what happens in the body [and] what happens in the long run in the next generation, is it something you carry with you… everyone who has Parkinson’s is not 78 but there are some that get Parkinson’s very early on.
If they then have children what does … this treatment do with the next generation.
Participants worried about cell rejection, becoming ill, that the cells would be put in the wrong place or that they would lose functions such as limiting the ability to go biking or swimming.
It was important for them as patients to be met by respect, get individualized treatment and to decide their treatment together with their doctor. They wanted to be properly informed about the treatment alternatives beforehand and were interested in learning what the treatments consist of and how they are manufactured. This information would help them decide whether they would accept treatment or not. However, some participants did not find it important where the embryos came from. As patients, they were not only interested in receiving proper information about available treatment alternatives but also about research and medical advances being made within the area. This new knowledge gave them hope, not only for themselves but also for the sake of their children and future generations.
Patients’ interests related to the donors
It was important for the participants that the donating woman or couple are donating embryos voluntarily. They should be able to choose if and for what purpose they want to donate and they need to give their consent. However, one person thought it was not necessary to have the couple’s consent as long as it is clear that the couple is no longer in need of them. Some described it as being important that the couple get to decide what to do with their embryos without coercion and that they and their decision should be respected. The embryos were described as theirs and they should therefore be in control over them.
Some feared that women or couples will be used or exploited in the process. It was speculated that an increased embryo demand possibly would lead to a black market where embryos are traded. One person feared that an increased demand possibly could lead to pregnancies being imposed and ended against women’s will in some parts of the world. There were also concerns that being able to sell embryos and get financial compensation would give couples incentives to donate embryos against their own will. Already poor and vulnerable groups were seen as being at risk of being exploited. There were disagreements when it comes to economic compensation of the donors. A “thank you” was suggested to be compensation enough while others thought it is reasonable to compensate the couple economically. However, it was seen as difficult to suggest reasonable level of economic compensation for the couple. Participants thought donors deserved to be respected throughout the process and well taken care of. They deserve to be shown appreciation and gratitude. By only allowing donation of surplus embryos from fertility treatments one would be more confident that the primary purpose of creating the embryos were to achieve a child and not to earn money.
Patients’ interests related to the society
Participants acknowledged that there are various attitudes in the society regarding using embryos for medicine development. It was seen as desirable to have a joint view on this matter in the society, not having it constitutes a problem. Discussing it openly was important and efforts should be made to reach consensus, at least most people should find it acceptable. Embryo destruction was expected to upset people considering the embryo to be life or life in being. There was an understanding of the different attitudes in the society and any resistance towards using embryos for this purpose. Public debates and headlines in the newspapers were foreseen. Some expected negative attitudes based on how e.g., abortion had been debated in some countries. They expected people to have different views for personal, ethical and religious reasons, and that some would refuse to handle the embryos for reasons of conscience. Different opinions were suggested to be met by respect.
Before deciding upon this matter, it was expressed that the question deserves careful considerations and an investigation of people’s attitudes and feelings in relation to making treatment available. Legislation was suggested to be written with present and future, long-term consequences taken into account. E.g., what will happen to embryos that are donated but not used? Another pointed out that with medical advances being made continuously, any changes in the legislation might unintentionally allow us to do things in the future that one is not capable of doing, nor aware of, today. Consistency in the legislation on what you can use embryos for was considered important.
Some participants described a lack of trust in the process of producing medicines. There were worries regarding researchers and pharmaceutical companies not having an ethical compass and that they would not be handling the embryos in an ethical manner. Some thought that the embryos should be handled carefully and with respect. However, it was also expressed that they did not need to be treated in any special way. There were concerns that the pharmaceutical companies could withhold treatment from patients to increase the demand and the prices. It was stated that they had higher trust in public organizations and preferred them to be responsible for medicinal production. Information and transparency towards the general public about how treatment is developed, its pros and cons, explaining why some embryos are used and others not, was important for participants. Supervision of where the embryos come from, how the embryos are treated and being used was seen as necessary to ensure trust in the process.
Profiting on treatments developed using cells from embryos was unproblematic for some whilst others considered it to be problematic or “wrong”. Some did not see it as a problem as long as no one is fooled. The industry’s top priority should be patients’ health, benefit the general public and make the treatment available for patients, not to profit from them or their illness. They were afraid that money could steer the direction of medical development. Some saw profiting as a problem when it restricts availability for patients, or when it comes from publicly financed research. Low costs for the patients were desired. Some saw it as more problematic to earn money on cells coming from an embryo, compared to other medicines, while others did not make any difference to them. It was important that patients’ health always is higher prioritized than profit-making of the industry. Some participants preferred non-profit making organizations to produce the therapy but it was also seen as an unrealistic scenario.
Public health and having healthy citizens were valuable points for participants. There were also concerns that treatment with cells from embryos would increase the societal and global injustice. Participants wondered which patients the treatment would be available to. Medical care was seen as a human right and participants wished for it to be available for all patients. It was believed that the pharmaceutical industry’s involvement and high prices of the therapy would limit the availability for patients in need of it. Patients with the greatest needs might not even receive treatment in some parts of the world. In other parts, the prices were believed to be too high and lead to only people with the greatest needs or wealth being able to use it. Participants requested a fair prioritization between patients. Some suggested that the ones with the most severe condition should be prioritized because they have a greater need, whilst others suggested that younger patients should be prioritized because they are easier to help and still contribute to the society by working.
Patients described how it is important for the society with scientific and medical advances being made. It was seen as a possibility for co-operations over national borders. They found it important to find additional treatments and a cure for PD, for the sake of coming generations. The national economy and reducing treatment costs were seen as important and should influence whether to use hESC or iPS-cells. Using both hESC and iPS-cells in therapy development was by others seen as positive, motivating it being unnecessary to limit our options early on not knowing their full potential. Some saw the potential economic benefit to the society by using cells from embryos in treatment of PD. The treatment was seen as a possibility to reduce health care costs and increase working ability among patients.