Reconsidering ethical issues about “voluntary egg donors” in Hwang's case in global context

Abstract

In the scandal around Korean stem cell scientist Woo-Suk Hwang, the inappropriate collection of human eggs as research material, fabricated data on ES cells obtained through somatic cell nuclear transfer, and fraudulent fundraising were condemned as legal and ethical transgressions. Among the criticisms, the donation of eggs by many women became a big issue. Some of the women were motivated by financial compensation or in-kind support, while others decided to donate their eggs without payment, being convinced that the research would bring therapy for thus far incurable patients, a promise unfulfilled. Regardless of the multiple reports published to articulate why the Hwang scandal happened in South Korea, we realized during our ethnographical fieldwork in that country that it would be meaningful to consider the ethical issues in a global context. In this paper, we focus on the motivations of the South Korean women who donated their eggs voluntarily as research materials, and aim to understand it in a more general context. We point out that not only their love of family but also other altruistic motivations for donating eggs are affected by the attitudes revealed in their narratives. Finally, we argue that there is a serious bioethical issue when a social environment of sick or disabled people makes women decide to help these individuals by donating eggs.

Keywords:

• stem cell research
• egg donation
• altruism
• gender
• ethics

Introduction

After human induced pluripotent stem (iPS) cells were produced in 2008, politicians, the media, and religious leaders became enthusiastic about iPS cell research as a potential way for avoiding the ethical issues surrounding embryonic stem (ES) cells with somatic cell nuclear transfer (SCNT), which requires either human embryos or eggs as research materials. The immense admiration for iPS cell research seems to have been affected by the Woo-Suk Hwang scandal in South Korea. Hwang was a leading scientist in the field of human ES cell research and SCNT who rose to the top after publishing two papers in relation to human ES-SCNT in Science in 2004 and 2005 (Hwang et al. 2004, 2005). However, these two papers involved not only a serious violation of medical ethics in collecting human eggs but also fabrications and falsifications of scientific data (Hong 2008, p. 2).

Before the scandal was exposed, Hwang emphasized in an interview that “the Korean egg donors were not paid and were motivated by a desire to help sick people and national pride” (Cyranoski 2004a, p. 14). After the interview, an ethical problem involving egg donation by two junior researchers in his team was pointed out (Cyranoski 2004b). In addition, a Korean TV program aired doubts about the existing payments to egg donors for Hwang's team, which violated the Bioethics and Safety Law issued in 2005. Soon after the exposure of the egg trade, Hwang admitted inappropriate egg acquisition by his research team and apologized in public. This, however, led to the disclosure of data fabrication in his two papers.

According to the National Bioethics Committee of South Korea, which surveyed the inappropriate egg donation and data fabrication by Hwang's team, the team received a total of 2221 eggs from 119 women; 63 women had provided their eggs as a “commercial donation,” 22 as “donation with in-kind benefit,” and 34 as “voluntary donation” including two researchers in Hwang's team (National Bioethics Committee 2006, pp. 4–9). The case of the women who underwent their fertility treatment and gave their eggs for Hwang's research with their treatment cost reduced was categorized as “donation with in-kind benefit.”

While “commercial donation” or “donation with in-kind benefit” was considered as compelling motivation, “voluntary donation” made by 34 females, including two researchers, caused doubts about their motivation. The information provided to those women, claiming that donated eggs would be used for therapy for people suffering from intractable illnesses and disabilities, strongly influenced and persuaded the women to donate their eggs (Myung 2006). According to anthropologist Y.G. Paik, family planning led by the Korean government in the 1970s raised women's consciousness about their bodies (Paik 2006). In an analysis by Leem and Park it was suggested that present-day reproductive technologies and cosmetic surgery have made Korean women aware of their right to dispose of their body parts, which encouraged those women to donate their eggs to Hwang's research (Leem and Park 2008).

These Korean studies depict in detail the complexity of the Hwang affair and its implicit background. But an emphasis on the distinctive factors in Korea might give the impression that lessons learnt from the affair inside South Korea are not useful outside it. Therefore we examine issues of egg donation conjunctively in South Korea and in a global context. Thus, we compare voluntary egg donation to Hwang's team with egg donation in other countries, using data for which we conducted interviews or archival studies.

Research methods

This article describes the results of ethnographical fieldwork based on semi-structured, face-to-face interviews performed in South Korea between 2006 and 2010. We interviewed 18 persons, including a woman who had voluntarily donated her eggs for Hwang's research, as well as staff members of Korean WomenLink, an action group promoting gender equality. Another interviewee was a father who hoped that stem cell research would discover a treatment for his son's disability as soon as possible. We also interviewed the representatives of some non-profit organizations such as the Korean Organization for Rare Diseases. Others contacted are scholars in bioethics, medical doctors, journalists and a lawyer. Our interviews were mostly conducted in the Korean language. Hong is a native speaker of Korean and was usually the main interviewer, but we sometimes asked a Korean–Japanese translator for Tsuge and other non-Korean members in this research project.

In addition to our interviews, Hong participated in the seminars held by the Ministry of Health and Welfare in South Korea to discuss multiple issues about stem cell research, the meeting organized by the Korean Society of Bioethics to review the Hwang affair, and the workshop held by a women's network opposing egg donation for research purposes. Tsuge observed several Japanese government council meetings and the public hearing for stem cell research. Tsuge also participated in a seminar in Japan which included two journalists from a South Korean feminist newspaper (this was accessible on the Internet in 2006). We also held a public seminar inviting two activists from WomenLink in South Korea in 2007.

Altruism and patriotism

The report of the Korean National Bioethics Committee concluded that two researchers in Hwang's team had donated their eggs voluntarily rather than by compulsion. However, Hwang's power to influence the futures of the researchers in his team could not be ignored1 (H. Hong 2008). Although we could not interview the two researchers in question, we would like to introduce a researcher, Dr K, by referring to archival documents. They reveal that Dr K's motivation for egg donation was to support treatment for sick children and her love for Korea.

Dr K was a PhD student in Hwang's team. She donated 19 eggs in 2003. According to her interview with Nature magazine, “she was happy to donate her eggs because she already had two children” (Cyranoski 2004b, p. 3). “In her original interview, she mentioned her desire to help sick children and her love for Korea” (Cyranoski 2004a, p. 14). However, she, along with Hwang, denied that his junior researchers' egg donations occurred (ibid., p. 13). Although she subsequently denied her egg donation, her donation became a big issue in May 2005. After Hwang's fabricated paper was revealed, Dr K reportedly resigned from her position. It was not only Dr K who was motivated to participate in egg donation to help sick children and to demonstrate love for Korea. More than 1000 women showed their willingness to donate their eggs for Hwang's research even after his data fraud was exposed. They also emphasized that their motivations for egg donation were to help sick children and to demonstrate their love for Korea.

Passion to help people: the case of Ms A

We met Ms A four times in 2006, 2007, 2009 and 2010. She was categorized as a voluntary egg donor in the report of the National Bioethics Committee. Since we tried to develop a rapport with Ms A, we did not record our interviews with her in 2006, 2007 and 2010. Thus, we recorded our interviews conducted in 2009 and partially in 2010 with her consent.

Right after the successful production of ES cells was published in Science magazine in 2004, Ms A read Hwang's book, Naui seng-myong iyagi (Hwang 2004), which means “Story of my life” in English. The book described Hwang's earnest effort to treat people with intractable disease and disability, which greatly moved Ms A since she had to take care of her uncle for a month after his liver transplantation. She wondered if Hwang's research could help people like her uncle. She was also impressed by people called “arumdaun-saramdeul,” “beautiful people” in English,2 a name granted to the voluntary egg donors in his book. He explained that “beautiful people” were the family members of patients with rare diseases, the ones involved in religious associations or women's associations. He continued as follows:

It is said that the honour to the accomplishment in Science magazine is that of the women and that “Korean society has made the egg donors with pure and beautiful hearts who can release the pain of others”. As in this case, each of the egg donors was labelled as the “beautiful people”. (Hwang 2004, pp. 106–108)

Ms A soon excitedly called Hwang's office and met the professor in person. She immediately trusted him, which helped her to decide to donate her eggs in 2005. After her egg extraction, in contrast to the “little pain” mentioned in the book, Ms A had to be hospitalized and received treatment for ovarian hyper-stimulation syndrome (OHSS). After 29 eggs were extracted from her ovary, she was diagnosed with “moderate” OHSS at the hospital where her eggs had been retrieved.

When Ms A learned about Hwang being discredited, she felt helpless and could not talk about her experience of egg donation to anyone. She acutely lost weight and suffered from depression. She also had uterus inflammation. Eventually, she felt she had to give up her job. Although she strongly wanted to continue to trust Hwang after the initial report of his activities, she finally made the decision to convey her experience to a writer from a weekly magazine.

She explained her motivation for egg donation in our first interview. Her devout Christian family made her believe that she should help and love others. She said that she was obsessed by the idea that she could not help doing something when she saw anyone in trouble. Although she suffered from the adverse effects of egg retrieval, she believed she did good things by contributing to Hwang's research to bring new medical treatments. She added that she was disappointed by Hwang since he had deceived her and others and that she could no longer trust others.

When the women's group set up a hotline for “the victims of egg donation” for Hwang's research, Ms A contacted the group. Then the group offered Ms A financial support for her medical expenses. They also suggested that she should start a civil suit. After consideration, she decided to be a plaintiff with another woman also appealing for compensation. The reasons for claiming compensation were the following. First, the women were induced by deceptive information that the research was intended to treat ill people. They would not have donated their eggs if they had known that the research was actually far removed from clinical practice and that the two papers published in Science were fraudulent. Secondly, although they had signed informed consent forms about their egg donation, the forms did not contain accurate information about the adverse effects of the egg donation procedure. The women experienced more serious adverse effects than they had expected. They were not informed at all about the serious effects, such as the possibility of death. Ms A decided to publicize her experience because she wanted people to understand her true experience.

We also interviewed a lawyer, Ms B, twice, in 2007 and 2008. She was one of the counsel for the plaintiffs. The lawyer explained the plaintiffs' claims as above. In addition, the lawyer also pointed out the seriousness of the issue that only two among 119 women who had donated their eggs for Hwang's research had become plaintiffs and that all others had kept silent.

Just before our third interview with Ms A, she had lost the civil case in her first suit because the plaintiffs could not prove that their egg donation was relevant to their damaged health condition. Their signed consent forms also counted against them. Although Ms A was devastated after losing the case, she was still willing to appeal. Ms A had appealed after our third interview, but the other woman decided not to. Ms A lost her appeal in late 2009. When we asked why she had contacted the magazine to disclose her experience, she answered as follows:

When reports about the fraud of the research result and the junior researchers' coerced egg donation were released, I realized my experience was not just my own problem. Although commercial egg donation and coerced egg donation were already recognized as problems, voluntary egg donation was not regarded as a problem. I thought I should bring to the attention of the public the issue of voluntary egg donation. I regret that I had donated without enough information about the adverse effects. At that time, egg donation for the research seemed something easy for me to do. In reality, I have suffered from terrible adverse effects. I hope that any women who consider egg donation positively and easily would learn the actual difficulties from my experience.

Ms A had decided to donate her eggs to Hwang's team because she was impressed by the kind action of “beautiful women,” and she tried to emulate them. In the aftermath of the incident, she perceived herself as “a young, immature woman” when she had decided to donate her eggs. We also asked her what she felt about the title “saint woman” given to voluntary egg donors:

At the beginning, I was bewildered by the reaction of the mass media which called me a saint woman because I donated my eggs for the sake of research. I had not expected to be praised at all … Now I really get upset whenever I hear the term because I think the word represents people's typical definition of what women should be. They think that a woman who contributes her eggs to help others is a “saint.” I am wondering then what they would call women who do not donate their eggs. To me, respecting egg donors is the same as demanding sacrifice from others, especially from women [in stem cell research].

After that time, she kept reconsidering the social meaning of her egg donation. With support from several women, mainly the members of the two women's groups acting for women's environments and gender equity, she also gradually changed her mind. However, she disclosed her mind to us in 2010 as follows:

I have been thinking about the identity of a “victim” through dance therapy and women's activities since last year. Feminists call me “a survivor” or “an experienced person” instead of “a victim” because the word includes gender discrimination. No word can express 100 percent of my present feeling. At least, I don't want to live as a “victim” anymore.

In her effort to re-find her identity, she seemed to swing between identifying with the traditional woman's virtue and the radical feminist's consciousness.

Hope for cure

In South Korea, the family bond is recognized as a strong tie (Leem and Park 2008). Parents and siblings tend to have a strong sense of responsibility in contributing to cure family members with incurable diseases or an abnormality. Non-compensated egg provision may be considered as a family member's role. In fact, according to the National Bioethics Committee, so-called voluntary donors said that their decision for donation was influenced by their acquaintance with patients and their families, members of the Korea Spinal Cord Injury Association, doctors in charge of patients, Hwang's team members, and members of the Association for Mothers with Sick Children (National Bioethics Committee 2006).

The profile of another woman who voluntarily donated her eggs to Hwang's research team was published in a paper. This woman later filed a lawsuit against the national government and the hospital because of her physical and psychological damage caused by egg retrieval under their sponsorship. This woman was advised to donate her eggs by her younger sibling who had suffered from an incurable disease. She was told at H. University Hospital that her eggs would be used for stem cell research tailored to individual patients. The hospital extracted her eggs in November 2004 (Son 2006a, pp. 6–7). She and her sibling were devastated when they heard of the fabrication of Hwang's paper. Thus, she also became a plaintiff with Ms A. After she lost her civil case, however, she did not appeal in the second suit, although she still suffered physically and psychologically from the adverse effects of her egg donation and Hwang's fabrication.

We also examined the significance of family values in the women's decisions to support Hwang's research for the people whose family members had serious illnesses or incurable abnormalities. We interviewed Mr C, a father who had a son with serious disability due to a traffic accident in 2008. He strongly supported Hwang's research and believed it would help his son recover. According to Mr C, when his son was hospitalized in order to cure his seriously injured nerve, a doctor introduced him Dr Hwang. His son was inordinately pleased because Dr Hwang promised to treat him. They deeply trusted Dr Hwang because of his generosity, and Mr C described his strong trust in Hwang:

In South Korea, disabled people cannot be independent because of many factors such as insufficient social welfare and under-developed infrastructures. Disabled people cannot dream of having independent lives in South Korea. They hope to become able-bodied people. It is the biggest hope they have. You will understand that he [Dr Hwang] is a really good person if you see him. You can understand. I am confident. I have always trusted him [Dr Hwang]. All of my family members and relatives agree to support him.

As indicated in this interview, living with disability in South Korea is very difficult. In our interviews in 2008 with representatives of the Korean Organization for Rare Diseases, Mr C emphasized the difficulties in disabled people's lives and their hope for cure. He admitted his hope for cure brought by stem cell research in the near future and supported Hwang's study even after acknowledging the scandal. He also emphasized that family members would voluntarily donate their eggs for the research.

We should understand that disabled people, their families, and medical doctors place their hopes in the medical model. At the same time, we should realize that this is not just South Korea's situation. Around the world, many people with incurable diseases or disabilities strongly hope to be cured by stem cell therapy.

Discussion

Here, we discuss two ethical issues of “voluntary egg donation.” First, we consider the emphasis on altruism involved in voluntary egg donation as an ethical issue. Second, we raise a question concerning compassion for those who suffer from incurable disease or disability. We consider that these two mentalities are strongly related to the ethical issues of voluntary egg donation though they are not usually realized as ethical problems.

The voluntary egg donors, called “beautiful people” in Hwang's book, symbolize Korean virtue, which precludes commercial egg donation. At the same time, the rush of women to donate their eggs for Hwang's stem cell research can be said to reflect a biopolitical order in which they voluntarily sacrificed their bodies for the national interest (Gottweis and Kim 2009, p. 233). It is unquestionably in the national interest to decline to accept financial gain from intellectual property rights involving science research. Furthermore, nationalism and the workings of a patriarchal society mobilized women as egg donors (Chekar and Kitzinger 2007, Gottweis and Kim 2009). These points of view explain both women's implicit role as donors in the stem cell research (Dickenson 2006, Leem and Park 2008) and the commodification of women's bodies as egg suppliers (Son 2006b, Waldby 2008).

Even before the Bioethics and Safety Act was issued in 2005, the principle of anti-commercialism, such as the unpaid, voluntary egg donation, was an important ethical issue in South Korea. Nevertheless, it is well known that human eggs are already commodified in other countries, such as the US. Because of globalization, thousands of couples or single persons travel in order to acquire human eggs, sperm, and fertilized eggs. The American Society of Reproductive Medicine (ASRM) limits the amount of payment for the donation of gametes and embryos on the principle that monetary compensation of the donor should reflect only the time, inconvenience, and physical and emotional demands and risks associated with egg donation (ASRM 2008). However, an investigation in the US shows that many advertisements of egg donation agencies placed in over 300 college newspapers violate ASRM guidelines. It points out that almost one-quarter of advertisements offer payment in excess of $10,000 despite ASRM guidelines (Levine 2010). The National Academy of Sciences guideline stipulates the payment of only expenses, such as transportation costs, to egg donors (Kayukawa 2009). California State's law prohibits any compensation above the expenses involved in the donation. But as compensation alone does not attract egg donors, laws are violated. Finally, since 2009, the committee concerning stem cell research in New York State has started to allow payment of “compensation” up to $10,000 to women who supply their eggs for ES cell research (ibid.).

From a moral point of view, the analysis by Almeling pointed out that women are more likely to emphasize altruism in egg or sperm donation than men in the US. Almeling also points out that altruism expressed in nearly 100% of the egg donor profiles is derived from packaged representations, shaped by the donor's interests in being selected and the agency's interest in recruiting clients, and these interests are structured in part by gendered social norms (Almeling 2006, pp. 154–155). This view indicates the possibility that anti-commercialism requires women's altruism. Women's decisions to support medical research to help family members and others suffering from a grave disease are all too easily regarded as independent. An Ob/gyn we interviewed in 2007, Dr E, indicated a case in which there existed pressure among sisters to donate eggs for fertility treatment:

I saw a case in which a mother took two of her daughters to our hospital and requested that we facilitate egg donation between the two women. I felt the mother was pressuring one of her daughters to donate her eggs to her sister. But it is not legal.

Yet many women in South Korea were always trying to understand their family members' feelings before they took their “voluntary” actions, and they indicated that “selfless love of their families” tended to be implicitly requested. Thus in reality, hidden factors affirm gender bias, and complicate the concept of choice in such a way that they require women to be material suppliers. This also happens in Japan. When one of us (Tsuge) participated in an open discussion about regenerative medicine in Japan in 2006, a representative of a parents' group of intractable disease patients stated that she would donate her eggs for research in regenerative medicine. Considering this type of cultural mentality in 2004, the Japanese Council of Science developed a policy regarding human eggs in the context of SCNT research into grave diseases. The policy states that voluntary offerings “should not be approved.” Several council members feared that raising extravagant expectations among family members of patients with intractable diseases in the process of recruiting egg donors would put pressure on females to donate.

Another analysis of egg donation proceeds from the point of view of gender relations in South Korea. When we held a public seminar about the Hwang scandal in Japan in 2007, a speaker from Korean WomenLink mentioned the gender relationship in connection with compulsory military service for males. She showed that young men sometimes complained “why don't young women have to be conscripted?” Kwon demonstrates that compulsory male military service has played a crucial role in constructing the notions of citizenship, nationhood, masculinity, femininity, motherhood and fatherhood, creating the essential “glue” that binds each of these six potent ideas to the concept of the nation-state in contemporary South Korea (Kwon 2001). Kwon also suggests that the militaristic consciousness of women under the male conscription system affects women to such an extent that some adopt a self-sacrificial attitude. Although Kwon clearly stressed that not every man is drafted in reality, the gender logic behind conscription still affirms the notion of sacrificing young males.

It seems fair to say that women who feel sympathy for young males sacrificing themselves feel compelled to make their own sacrifice for the nation and/or other Koreans. This idea leads to another interpretation of voluntary egg donation. Korean women do not appear to be forced to donate their eggs; however, the gender roles in society push these female researchers to donate their eggs “voluntarily.” In the case of women involved in egg donation for experimental scientific research, the women's compassion for sick or disabled persons was a compelling factor when added to the misleading information about the potential of their contribution to cure the sick. Our interview with Mr C, the father whose son was severely injured by an accident, helped us understand that families supporting their disabled members continued to expect new therapies from Hwang's research, and that they earnestly hoped to bring them back to normality. Furthermore, not only Ms A but also Dr K described their compassion for sick and disabled people as the motivation for egg donation, even after they knew the facts of Hwang's research. Anthropologist Scheper-Hughes considered the nature of gifting, family obligations, reciprocity and invisible sacrifice through her study on living donor transplant. On the basis of international data, she indicated a gender bias in living donation, with females as the more likely donors (Scheper-Hughes 2007). She argues, “rather than celebrate the ‘altruism’ of women worldwide, we ought to be paying attention to the social pressures exerted on them to be living donors” (ibid., p. 508).

Moving to another contentious issue, we consider the economy of hope and healing behind the continuous drive to find cures for the disabled. The application of advanced technologies is sometimes presented as a catalyst to expand the choices of individuals. Opposition to the research drive for cures may be regarded as a violation of other people's freedom of choice, depriving them of a possible cure in future. On the other hand, opponents worry that the sick and the disabled might be labeled more distinctly than ever as people whose illness or disability should be treated (Tsuge 2002, Tremain 2006). This concern is similar to the problems identified by members of the disabled movement about emphasizing the importance of “cure.” What they suffer is often mainly caused by social and cultural relationships, and an environment intolerant of disability. Unless this main cause is resolved, regenerative medicine may continuously accelerate the discrimination between the “normal” and the “abnormal,” whatever hopes it could deliver.

Women living in society behave as subjects to voluntarily participate in science, while they are treated as objects of scientific experiment at the same time. Anyone who wishes to cure the discomfort and suffering of the disabled, and proactively participates in a scientific experiment, is at the same time treated as an object, in the quest to advance science to free society from disability, and increasingly from old-age diseases. We consider that such paradoxical surroundings induced the women in a roundabout way to donate their eggs for Hwang's research. We also take the lessons to heart that it could happen again anywhere in the world if we fail to understand the profound ethical issues around “voluntary” egg donation.

Acknowledgements

First of all, we are grateful to all interviewees for our research. Our research is a part of the research project “Medical Technologies and Gender” supported by Grant-in-Aid for Scientific Research (B) (No. 18310169) of the Japan Society for the Promotion of Science (JSPS) from April 2006 to March 2008. We would also extend appreciation to all members of the project, in particular Kaori Muto and Junji Kayukawa.

Notes

According to the yearbook of educational statistics in South Korea, the ratio of female faculty staff members in natural science and technologies in 2008 is 17.7%, and according to the investigation of scientific technology research developmental activity in 2007, the ratio of female scientists is 14.9%. (Ministry of Education and Technology 2010)

The meaning of “beauty” in Korean includes not only attractive appearance but also tender solicitude.