Choosing Assisted Reproduction: Social, Emotional & Ethical Considerations

Choosing assisted reproduction: social, emotional and ethcial considerations

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Infertile parents—the very same people who have struggled with the inability to give life—now have the potential to give life and more life and more life still. But what of the alternative: Perhaps, but what of the children? How will they feel to know that, unlike other adoptees, they were created by people who desperately wanted to parent them. Unlike any other adoptee in history, their fate was not determined because a pregnancy was unplanned or unwanted or because social or financial circumstances prevented their biological parents from raising them.

Rather, this new breed of adoptees will have been placed for adoption because of a simple twist of fate: This new breed of adoptees will grow up knowing that the random choice of an embryologist meant that their biological siblings have the privilege of being raised by their intended parents and they do not.

In addition to the profoundly troubling challenges faced by these adoptees, who will live their lives knowing that their identities were shaped by a lab decision, there are the biological parents and biological siblings to consider. Surely the biological siblings will face some of the same questions as their adopted-out embryo sibs.

Presumably, these adoptions will be handled with complete openness because people recognize that it would be unconscionable to keep the truth from either the adoptees or their biolgical siblings, So what will it mean to parents when they see their adopted—out offspring struggling? Generations of adoptees have taught us that adoption is difficult, that questions of loss and identity inevitably arise, that those who lose their biological connection often struggle to make sense of their lives.

Just as adoptees have taught us about loss and identity, birthparents have poignantly described their own post-placement struggles. Multiply this by ten or twenty or fifty fold with our embryo cryo-parents. No doubt they will react all the more if there are problems within that family.

How will they handle their feelings within themselves and as a couple? Will these parents, who have suffered this disenfranchised loss, take it out on each other and what will this mean for their marriages? Questions abound; answers are absent. Adoption, as we have known it, is a solution to a social problem: Need cries out, adoption answers.

In so doing, adoption serves the best interest of children—new lives are entering the world and without adoption, they would have no one to feed them, change them, love them, teach them. It is difficult for me to view a cryopreserved embryo as having the same feelings, needs, destiny as a growing fetus. However, there are those who argue that life begins with fertilization, How then can they act in the best interests of their embryos? It seems to me that they face choices and the challenges of achieving truly informed consent.

Each of their decisions represents a choice that I believe most everyone would regard as ethically and morally sound. Couple A tried for several years to conceive. When several IVF cycles failed, they left treatment and sought adoption. A did not conceive and the couple went on to successfully adopt.

Choosing Assisted Reproduction: Social, Emotional and Ethical Considerations

Couple B had twins through IVF and when the twins were two years old, the parents decided that their family was complete. However, they, too, felt responsibility for their frozen embryos. Unlike couple A, Couple B felt that they had to do everything in their power to offer the embryos life. In keeping with their beliefs and their faith, they underwent a transfer cycle. B did conceive but miscarried early in the pregnancy. Couple C felt that they could never risk the possibility of having extra embryos to care for. Those of us who want to explore the promise of stem cell research, can feel sad that there are IVF couples who would choose other paths for their extra embryos.

We might point out to them that these embryos might help save lives, including their own and those of their children. However, theirs is too profoundly serious and personal a decision and a choice to be criticized or bullied. Instead, I hope that couples who find themselves in this difficult dilemma will think about Couples A, B, and C. The second part looks in detail at third-party parenting options—sperm donation, ovum donation, surrogacy, gestational care, and embryo donation.

The authors provide guidelines and suggestions for openness with childre born as a result of ART, strongly urging truth concerning genetic origins. One of the reasons why the women who participate in IVF forums are able to express themselves more freely is the feeling that they are among a group that understands them completely, has had the same experiences and so has deep knowledge of the feelings and thoughts concerning the whole process of IVF. They would not mock my longing for having a child. For some women, the anonymity offered by the forum was an important reason for their participation and free expression, since they could safely reveal their innermost thoughts and share feelings that their own social circle was not allowed to know.

The women who participate in IVF forums make use of it in order to reveal their innermost thoughts and feelings.

Reproduction without sex: social and ethical implications

For these women, being members of a group which shares their experience, coupled with the anonymity that they enjoy online, is a great means of expressing themselves freely without fearing they will not be understood or that what they reveal will cause negative repercussions in their everyday life. When Greek and Dutch women are asked about what they feel they have gained from their participation in the IVF forums, the answer seems to be: Most prominent ones include: I got understanding, support, and enthusiasm about going on, tremendous information which protects me from missteps.

I feel for the results of the girls and feel that I have a big family. Participation in the forums, however, has also yielded some negative experiences as well, like becoming emotionally affected by the negative IVF results or pregnancy losses of other forum members and feeling that they should perhaps pursue more extended testing or therapy, since other members have done so. When little babies are lost by mothers who have tried so hard to bring them into the world. It is a horrible feeling. Despite the negative experiences, however, the overwhelming majority of both the Greek and Dutch women have evaluated their forum participation as something positive, which has helped them through great difficulties and has enriched their lives by providing a significant amount of information, invaluable support and creating real connections with others.

As far as I am concerned, forums like Freya fulfill an important societal role. It has offered me many very good friends, since we now meet offline. I have learned a lot of thing about IVF and medical tests; I have learned to discuss more freely my IVF attempts even with people outside the forum. The forum has made me feel proud for the hard fight that I have been giving and it has helped me many times when I feel weak to find my strength again and get back on my feet.

It appears that the women participating in the IVF forums acquire a full range of experiences and emotions: These findings highlight how online medical communities can play a very important role in providing patients with information, help and emotional support. Their offer of online self-help and social support has been dubbed virtual community care Burrows et al. The findings show the emotional impact IVF can have on its users. IVF is not just a medical solution to a biological problem.

It is an extremely invasive procedure that is meant to solve a problem that has far-reaching personal, social and existential dimensions, and the procedure itself also has substantial impact on the lives and self-image of women and couples.

Emotions are often dismissed in decision making about medical and other technologies. They are seen as irrational distractions that blur the understanding of objective facts. However, recent emotion research shows that emotions are a source of practical rationality Damasio Emotions are appraisals, they show us what we value and draw attention to evaluative aspects of the world Scherer ; Frijda ; Lazarus ; Solomon ; Goldie ; Nussbaum ; Roberts ; Roeser Medical technologies such as IVF are not neutral tools; rather, they have an impact on the well-being of human beings, for better or worse.

They carry risks and benefits with them. Assessing risks and benefits goes beyond measurable medical and technical data, it also involves moral and evaluative aspects Fischhoff et al. The benefits of IVF are obvious, but hard fully to grasp without understanding the emotions of a couple whose wish to have a child is finally fulfilled.

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Furthermore, the risks of IVF go beyond medical complications. The risks of IVF also concern the impact they have on the psychological and social well-being of women and couples and the people who care for them. Without knowing the emotions of IVF users, it is impossible fully to comprehend the impact that IVF has on people, positively and negatively.

This suggests that it is highly important that the emotional concerns of women and men are taken into account in IVF treatment, health care and policy-making. IVF can be seen as a way to take control over nature and people who would otherwise not have children can possibly have them, which is a tremendous opportunity created by this technology. However, as we have seen, the negative effect of treatments and the emotional and psychological stress can be substantial.

In order to make the most of IVF technology, emotions should be taken into consideration and attention should be paid to how such emotions can inform policy and health care. The most difficult part is how to do this in practice. The internet and social media are extremely important ways of expression for people undergoing IVF treatments. It is important to analyze emotional concerns expressed in such media.

Of course the anonymity and privacy of the forums should not be threatened, but it should be possible to discern some general concerns that are shared by many IVF patients. The insights presented in this study and possible follow-up studies can inform professionals working with IVF patients about the experiences and emotions these patients undergo. Reading about the happiness of a couple that finally gets a child due to IVF provides for a thorough understanding of the positive value this technology can have.

On the other hand, reading about the suffering of women who undergo the strict regimen of IVF leads to compassion and can provide for support by partners, family and friends and to providing more pleasant conditions during the treatment by healthcare providers. It may lead to choosing slightly more expensive but less invasive treatments. Understanding the pain and disappointment of women or couples whose invasive and costly IVF-treatment does not provide them with a pregnancy, or where an IVF-induced pregnancy ends in a miscarriage, can lead to more compassionate care by healthcare providers and family and friends.

The emotions and concerns of the person who is a recipient of care should be taken into account by health care ethics committees. According to Held , care is primarily a relation in which caretaker and cared-for share an interest in their mutual well-being. Held and Noddings argue that in order for a relation to be labeled care, the caring effort made by the caretaker has to be appreciated and acknowledged as care by the person that is being cared-for.

The caring attitude has to be coupled with a concern for what the recipient needs and what she would define as care for her, as an individual. One has to particularly take into account the fact that women going through IVF are in a very vulnerable state, emotionally and physically, since they are going through a very demanding medical procedure that might be their only chance to achieve pregnancy and experience motherhood. This requires an understanding and empathetic environment between the IVF health care providers and their patients.

To analyze and include emotional concerns expressed in discussion forums in IVF-related health care could be a way to make IVF health care more compassionate and empathetic towards IVF patients. For example, a great source of disappointment for women going through IVF is the apparent lack of psychological support and guidance offered by the hospital or fertility center during the process of IVF. Despite the obvious usefulness of the forums, face to face contact with a professional psychologist can be considered as a potentially positive and valuable service.

It would, therefore, be a prudent move of the health care ethics committee to propose that hospitals and fertility centers employ the services of a licensed psychologist or trained social workers, who will be able to have personal contact with IVF users and individually evaluate their needs.

Another source of uncertainty and frustration is the lack of full explanation of test results and diagnostic procedures, as well as insufficient transparency during the process of IVF from their doctors. Such behavior can cause doubts on the part of the IVF users who were not pleased by their treatment and expected more detailed explanation. Also, quite often the overly optimistic attitude of doctors regarding the positive outcome of an IVF treatment could cause great disappointment and distress to the IVF users after a cycle failure, since the same previously optimistic doctors were not able to offer a satisfying explanation after the failure.

It is perhaps useful for the health care ethics committees to point out that doctors should not assume that their patients lack the necessary knowledge to process medical information, nor should they neglect to offer full explanation of the process around IVF, tests performed and IVF failure rates. Being open and honest with their patients will increase the feelings of trust and confidence of the patients and will lead to a better and fruitful cooperation.

Health care ethics committees could also attempt to offer a possible positive improvement of the information offered by the IVF forums by requesting that one or more doctors, specialized in IVF and fertility problems, should participate in IVF and dispense medical advice, which would provide the forum members with medically correct and reliable answers, or could volunteer to certify the correctness of the medical information and articles provided by the forum.

The forum could also be divided into two sections, one that is accessible for everyone, including doctors, and one that is only accessible to forum members. For the forums, this could be a step in offering quality medical information, since many of the forum users, although grateful for the variety of medical information, appear to be unsure about the trustworthiness of the source and therefore, do not use the medical information offered in the forums. A certified doctor offering information in IVF forums would improve the trust and willingness of the users to consider the medical information and even incorporate it into their therapy plan.

Thus, before deciding to integrate the help of a doctor on an IVF forum, there should be a careful evaluation of the feelings and possible reactions of the forum members to such a possibility. The emotional impact of infertility can be devastating for women, and even though the use of IVF can assist them in realizing their wish for a child, its strict administration and its physical and psychological impact can cause a new set of problems, not just for the women, but for their partners and social circle.

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Participating in IVF-centered forums is credited with offering women an enormous amount of information and support, helping them with taking important medical decisions and giving them a safe solace where they can express themselves among fellow IVF patients and feel understood and supported, in a way that perhaps compensates for the lack of support and understanding in their private lives. These emotional needs and concerns expressed in IVF forums could be instrumentally used by health care ethics committees, in order to promote measures that can aid IVF health care professionals in offering more patient-oriented care and support for women going through IVF.

Taking the emotional needs of IVF patients into account can help in creating a more balanced and supporting relationship between IVF users and their physicians, as well as providing them with information and support specifically tailored to their personal needs. The authors would like to thank the women members of Dutch and Greek IVF forums that kindly agreed to participate in the research by filling out the questionnaires. Open Access This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author s and source are credited.

National Center for Biotechnology Information , U. Published online Aug 6. Author information Copyright and License information Disclaimer. This article has been cited by other articles in PMC. Abstract Women who suffer from fertility issues often use in vitro fertilization IVF to realize their wish to have children. Emotions and expectations can run high and the whole process leaves the women exhausted and disheartened, as well as causing rifts in the relationship with her partner and social circle, as many of the women of the survey reported: Dutch user Psychologically, the hormones make you very irritable and reacting strange to everything.

Greek user For other women, however, the experience of IVF was more mixed, since they did not gain only negative experiences, but also positive ones, like adopting a healthier lifestyle and getting closer to their partner: Dutch user It was positive. Support from Family and Friends Going through IVF can be a very private and delicate issue; some of the couples that are busy with an IVF treatment prefer to keep this fact to themselves; others decide to share the news with selected members of their family and social circle. The attitude from the people who are informed about the process can vary greatly; some women report that they have encountered great disinterest and lack of understanding from the people close to them which, causes great disappointment and hurt feelings: Dutch user Other women on the other hand have reported positive reactions and support from their environment regarding IVF: Everyone who knows [about IVF] has shown complete support.

Dutch user Relatives do not know about it; friends do try but if you do not have knowledge of IVF even as a concept, you do not always help even if you have every intention of doing so… I am satisfied because they are very interested. Greek user This attitude seems to be quite prevalent among friends and relatives of women who use IVF; the lack of adequate information about what IVF actually entails, as well as hesitation to tread on such a private matter can stilt communication between women who go through IVF and their social circle.

Reasons for Joining a Forum For many women, the main reason to join an IVF forum was to be able to share their story with others and to read their story in turn; to receive and give advice to women going through the same experience as they are: Greek user Another important reason for many of the women to join a forum was the feeling of recognition that they were among people which were also sharing the same experience and also the same feelings and questions, as well as the fact that the women in the forum could offer them understanding and support that people who have not experienced IVF could not.

Greek user It can be deduced that women decide to join a forum about IVF in order to receive information, support, share their feelings, or feel that they are not alone in going through IVF; the forum is thought to provide them with equipment that they have difficulties in getting from their environment. Ways of Emotional Expression In the IVF forums, women report that they can allow themselves to express their thoughts in a very open and uncensored way; feelings of sadness, anger and frustration find an outlet, and sharing very private thoughts is not uncommon: Dutch user One of the reasons why the women who participate in IVF forums are able to express themselves more freely is the feeling that they are among a group that understands them completely, has had the same experiences and so has deep knowledge of the feelings and thoughts concerning the whole process of IVF.

Table of Contents for: Choosing assisted reproduction : social,

Greek user For some women, the anonymity offered by the forum was an important reason for their participation and free expression, since they could safely reveal their innermost thoughts and share feelings that their own social circle was not allowed to know. It is easy to uncover your feelings to a stranger. Greek user Participation in the forums, however, has also yielded some negative experiences as well, like becoming emotionally affected by the negative IVF results or pregnancy losses of other forum members and feeling that they should perhaps pursue more extended testing or therapy, since other members have done so.

Greek user Despite the negative experiences, however, the overwhelming majority of both the Greek and Dutch women have evaluated their forum participation as something positive, which has helped them through great difficulties and has enriched their lives by providing a significant amount of information, invaluable support and creating real connections with others. Dutch user It has offered me many very good friends, since we now meet offline. Greek user It appears that the women participating in the IVF forums acquire a full range of experiences and emotions: Conclusion The emotional impact of infertility can be devastating for women, and even though the use of IVF can assist them in realizing their wish for a child, its strict administration and its physical and psychological impact can cause a new set of problems, not just for the women, but for their partners and social circle.

Acknowledgment The authors would like to thank the women members of Dutch and Greek IVF forums that kindly agreed to participate in the research by filling out the questionnaires. Appendix Internet Forums Observed Dutch forums http:

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