Characteristics of the participants
Among the 12 participants, one was a gynaecologist specialist, two were gynaecologist consultants, four fertility midwives, two clinical embryologists, two were bioethicists, and one was a lawyer. Educational qualifications varied among the participants, with all the gynaecologists, clinical embryologists, and bioethicists holding postgraduate qualifications, while the midwives and the lawyer possessed graduate-level qualifications. Each participant was assigned an identifier from P1 to P12 for reference throughout the study.
Through a comprehensive thematic analysis aligned with the study objectives, six overarching ethical issues emerged to form the main themes. These included (1) Inequitable access, (2) Balancing risks and rewards, (3) Fate of surplus embryos, (4) Status of the embryo, (5) Compromises in informed consent, and (6) Potential risk of breach in confidentiality.
Theme 1: Inequitable access
The participants highlighted the presence of barriers, the role of government funding and income-based pricing, the significance of insurance coverage, and the need for flexible payment plans to ensure fairness and equity in accessing fertility treatments. Participants particularly identified financial constraints as a barrier that hinders equitable access to IVF treatment. As participant 1 mentioned,
In our part of the world, IVF is fully fee paying. So, those who have the money will have access to the procedure (P1, gynaecologist consultant, IVF centre 2).
Today, if you are not a high-income earner, I doubt you can go through IVF treatment. You may abandon it on the way (P9, clinical embryologist, IVF centre 3).
However, a participant provided justification for access barriers to the general population by citing the need to prioritize more critical healthcare issues within limited resources:
So, we should give more to life threatening medical situations or clinical situations. So, if you compare putting an infectious disease treatment on the NHIS (National Health Insurance Scheme) compared to this [IVF treatment], the ethical arguments may lead you to favour the infectious disease…so the ethics of rationing becomes very important…if you are not able to have a child, you can live your full life (P10, bioethicist).
Despite access challenges, a participant mentioned that exceptions should be made for certain individuals who lack mental soundness to parent children:
If they[patients] are not, you know, mentally sound…they cannot be responsible parents, so they should not be given a chance at IVF. These are the few exceptions I may think of (P1, gynaecologist consultant, IVF centre 2).
Another aspect of equity highlighted in the study relates to who should be entitled to access IVF treatment. Some of the participants emphasized that the type of relationship between couples should not be a factor restricting IVF treatment. They extended recognition to diverse family structures, including single parents by choice. However, same-sex couples were not explicitly considered for IVF treatment:
Well, the truth is that people who come here, they come as partners. We do not know whether they are legally married or not…There are women who do not have the eggs, and they may ask the centre to assist them to get female egg donors so they can carry pregnancy with them. There are a few women too who come, they do not have any male partners and they do not have anybody in mind to donate the sperm for them. We have not had anybody, especially, let's say, two males who come, they want a female to be a surrogate for them neither have we had two women come in and say they are a couple (P1, gynaecologist consultant, IVF centre 2).
To address the inequities in access to IVF treatment, some participants reported a need for government intervention and funding to make fertility treatments more accessible to a broader population. Income-based pricing models were proposed by one of the participants to ensure fairness. She argued that sliding-scale fees based on income could make treatments more affordable for lower-income individuals or couples:
You may have a couple who would be able to pay outright, probably charge based on people's ability to pay so that they can reduce the cost for those who do not have to pay. So those who have should pay more and then those who do not have, should be subsidized (P11, bioethicist).
The absence of insurance coverage for fertility treatment was identified as a major barrier to equitable access. Participants thus called for insurance policies to include fertility treatment coverage to reduce the financial strain on patients. As participants 8 and 10 mentioned,
Possibly if insurance could come and cover some aspects of the treatment, it will help (P8, Clinical embryologist, IVF Centre 2).
Whatever the private facilities in particular who would not forfeit their profit margins can do is to probably collaborate with some insurance system (P10, bioethicist).
While payment plans were seen as a potential solution to address affordability concerns, some participants noted that challenges with payment plans, such as unstable instalment rates and inflexible terms, could create additional financial burdens:
We do payment plans for our facilities…We have as low as five hundred…Unfortunately, because it is not well afforded, some people start payment in bit which may go beyond a year, then our prices are reviewed, and they come back to meet a higher price. Unfortunately, there is nothing they can do about it due to unstable foreign exchange (P2, gynaecologist specialist, IVF centre 1).
Theme 2: Balancing risks and rewards
The findings revealed that individuals and couples often engage in delicate balancing when considering IVF treatments. The desire for multiple births, coupled with the associated risks, presents a complex ethical decision-making dilemma. Additionally, the emotional toll resulting from treatment failure adds another layer of complexity to treatment.
The clients expect the possibility of multiple foetuses. So mostly they are happy to get twins or triplets and want us to manage them to term and that is what we do (P7, fertility midwife, IVF centre 3).
Participants however reported the challenges associated with multiple gestations (such as twins or triplets) resulting from IVF treatments:
Our main concern is cervical insufficiency, the risk of abortions and all that…We have had one. She had uterine atone. The uterus just become too relaxed that it cannot even contract. So, they end up bleeding more. So even before we enter the theatre, you must secure blood and all that. So, in the absence of it, the client's life is at risk, because they have carried more than one, so the uterus is over overstretched (P6, fertility midwife, IVF centre 2).
Additionally, providers often make recommendations based on medical considerations, aiming to balance the desire for a successful pregnancy with the potential complications of multiple births:
Whenever we are doing embryo transfer, we are tight in the corner as in, when we do put only one, and it does not work I mean, we have wasted the patient time and money. So, if we put two, in case one does not work, one will stand…So, for the healthy young ladies[lady], she can carry more than one foetus, she can carry two. So, in that sense, when we start antenatal, we keep on monitoring (P5, fertility midwife, IVF centre 1).
One gynaecologist consultant at IVF centre 3 further raised concerns about some adverse effects of treatment associated with IVF treatment and the difficulty of navigating such adverse effects:
When it comes to assessing the risk and benefit of IVF treatment, the risk of hyper ovarian stimulation and the benefit of retrieving adequate eggs, then it becomes problematic…if we compare the adverse effect, it gives some people (P3, Gynaecologist Consultant, IVF centre 3).
Moreover, one of the participants shared couples’ experiences dealing with the emotional and psychological impact of treatment failure, including the fact that the fear of not achieving a successful pregnancy often heavily affects individuals and couples undergoing fertility treatments:
You can understand how they[couples] feel when it does not succeed, the depression, the disappointments, the economic loss, and all that (P1, gynaecologist consultant, IVF centre 2).
Theme 3: Fate of surplus embryos
Embryo storage and disposal emerged as challenging ethical dilemma. The participants responded to questions related to the moral status of the embryos, the responsibility of the parents in decision-making, and the impact of choosing to discard or donate unused embryos:
So, I believe it [embryos] can be donated. I believe there should be a charity that also would be into donation of these embryos. So, if that avenue is there, that could be explored instead of just destroying them (P11, bioethicist).
Some participants believe that embryo storage should depend on the consenting couple:
When you do the egg collection, then you need to affirm it to them [couples] that maybe the number of eggs you have got, is it more likely some will be left. You talk to them [couples] to start preparing towards freezing. Some people readily accept, others too may not want to; they say, well, you just put in what you have to put in, the rest they are not willing to store. Others may ask you to preserve it for people who want it. Others may tell you to destroy it because they do not want it (P1, gynaecologist consultant, IVF centre 2).
The commercialization of embryos particularly raised ethical concerns among participants. They deliberated over the implications of commodifying human reproductive materials and the potential exploitation of vulnerable individuals. Ethical considerations spanned issues of affordability, consent, and the role of profit-driven entities in fertility treatment:
I think this [commercialization of embryo] is something that we have to look into, you know, there should be a system in place where people are adequately informed (P11, bioethicist).
So, if you work around it in such a way that you adequately compensate for this without excessive profiteering, that for me, would be a good point or balance point to work things out with (P10, bioethicist).
Some participants believe that commercializing embryos should be completely avoided, while others argue that they could be subject to reasonable negotiation:
Selling of embryos should not be encouraged. It feels like you are selling something that does not have to be sold, I think we should not. We can give some appreciation to the one who is giving out the embryo or the gamete, but not like prescribing a fee. We should not prescribe an amount (P7, fertility midwife, IVF centre 3).
Selling any part of the human body has some legal consequences. But a person can receive compensation for giving out an embryo, if there is that agreement between parties (P12, legal practitioner).
Theme 4: Status of the embryo
Participants debated about when personhood begins and whether embryos created during IVF should be considered as having moral or legal standing. Some participants stressed that in the decision-making process regarding the existence of a child, the child does not play an active role, and they do not inherently possess rights. Instead, the primary decision-making authority lies with the parents:
Do you have a right before you exist? So, if the child is unborn, has the child an identity, has the child a right? What is the role of the child in coming into existence? Is it not the decision of the two parties[parents]? The child has no part to play in that. So, then where lies the right of the unborn child in doing that? It is just the decision of these two (P10, bioethicist).
The unborn child has no legal status. Only the parents have. So, if that unborn child becomes a human, then they can exercise their rights (P12, legal practitioner).
Nevertheless, some participants acknowledged the significance of making decisions that prioritize the well-being and potential rights of the unborn child:
You have to weigh with the quality of life…with the disadvantage of being born. If the risk is way beyond the minor acceptable risk, then I do not think it is reasonable to give birth to that child to come and suffer. If the risk is too much and that has to do with the quality of life for that child that is going to be born, then, to me, you have to consider the outcome (P11, bioethicist).
Theme 5: Compromises in informed consent
Participants stressed the importance of offering comprehensive and comprehensible information about the proposed treatments to couples who seek IVF treatment. They believe that couples should fully grasp the potential risks, benefits, and alternatives to make informed choices about their fertility care. As participants expressed,
We have materials to aid them understand and seek their feedback from the understanding they got. Our terms and condition of payment, the risk and benefits of the treatment, the success rate and possibility of failure (P3, gynaecologist consultant, IVF centre 3).
However, it was noted that the acceptance of informed consent may be influenced by the specific situations and circumstances in which couples find themselves. Several factors influence the acceptance of informed consent among couples undergoing fertility treatments, such as in vitro fertilization (IVF). Psychological distress, common in this context, may hinder their ability to comprehend and accept the details, raising concerns about the validity of their consent. The couples' fertility journeys and history, shaped by past experiences, impact their trust and understanding during the informed consent process.
Some people may seem to have understood. But maybe they did not because of the desperate nature of the situation. They are willing to go through anything so long as it will guarantee them pregnancy and baby…those who are quite well educated understand some of the processes and all that. For those who are not educated…giving them instructions sometimes may not go down too well for them (P1, gynaecologist consultant, IVF centre 2).
The complexity of medical procedures and associated risks involved in IVF treatment could also influence patient perception and acceptance, particularly for those facing greater medical complexities or potential health risks. Cultural and religious beliefs contribute significantly to perspectives on assisted reproductive technologies, affecting the acceptance or rejection of certain aspects of IVF. Educational background and varying levels of understanding among couples may affect the quality of informed consent.
Theme 6 Difficulties in maintaining Confidentiality
Participants highlighted a need to maintain the strictest confidentiality regarding patients' personal and medical information. However, IVF treatment is performed by a multidisciplinary team of healthcare professionals, making it sometimes difficult to maintain strict confidentiality.
IVF is more privacy protected because of the whole stigma from society. So, we as healthcare providers are tasked to ensure that the information of the patient is unknown to providers who are not directly caring for our clients because some providers can have big mouths (P7, fertility midwife, IVF centre 3).