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Archived Comments for: The student and the ovum: The lack of autonomy and informed consent in trading genes for tuition

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  1. Is trading "eggs for tuition" indeed so morally bad?

    Ivan Sabolic, Institute for Medical Research and Occupational Health, Ksaverska cesta 2, 10001 Zagreb, Croatia

    20 July 2004

    Dear Editor,

    Recently I read the manuscript by Papadimos TJ and Papadimos AT (RBJ 2004, 2:56). Being a witness of an enormous scientific, medical and technological advancements during the last several decades, with their tremendous impact upon social and individual life as well as upon psychology of human beings all over the world, I was quite confused reading that manuscript. I could not see a significant originality in this partially sociological, partially medical, and partially philosophical lamentation about the ethics of “trading eggs for tuition”. Especially, I did not understand a reason for writing it – the explanation that young (irresponsible, more or less brainless, decision-dependent on their parents, friends and university administration) female students would sell their ova (“trading genes”) for having enough money for paying tuition, is too vague.

    The unusual motivation for writing this debate seems to be the local rumor that young university female students could take their advantage of being female, sell their ova that can be used for assited reproduction and/or stem cell technologies, and use money to pay the university tuition. The authors seem to be concerned with: a) phenomenon that tuition for the “ivory tower, e.g. university” would be payed by some kind of “dirty money”, and b) unclear possibilities that young female students in the age of 20-25, being financially dependent, lack personal integrity and autonomy in making proper and resonable decisions. Therefore, according to their opinion, the autonomy of these women should be overruled by the judgement of the “moral majority”, represented by either family, friends, university superiors, or somebody else. I would say, a very peculiar opinion and suggestions these days. Here I list a few comments to two basically very controversial problems.

    The problem of “trading genes for money” is not the new one – it is already present in a widely accepted form in cases of selling blood, cornea, sometimes kidneys and other organs, and especially sperm; the sperm trade legally takes place in many countries worldwide. To my view, as long as there will be somebody to offer money for something, that something will be sold this or that way, whether the university staff like it or not. The phenomenon that the female students would sell their ova and use money to pay tuition seems to be an ambiguous problem. Would it be more acceptable if the money, so earned, would be spend for non-academic needs, such as clothes, books, travel, food, rent, etc… rather than for tuition? Would it be more acceptable if the ova are not sold, but only donated? Why, from the ethics point of view, the possibility that the young female students would SELL (pejorative) their ova is so dramatically different from the possibility of DONATING (noble) their ova, if their future health is the main focus of concern? Why the “selling sperm for money” is not viewed the same way, e.g., as “trading genes for money”? The main ethical, medical, and philosophical problem is not whether ova can be sold or donated by the female students or any other woman, but whether ova should be given and used at all for assisted reproduction and stem cell technologies. Thus, by emphasizing the trading “ova for money for tuition”, the authors tend to greatly oversimplify the basic ethical problem.

    Second, by questioning (better to say, negating) the personal integrity and autonomy in decision of the female university students, who are usually in the age of 20-25, the authors have entered a shaky terrain where their opinions could easily be declared obsolete, too conservative, fundamentalistic, sexist, male chauvinistic, and related to restrictive religion. In most more or less developed countries of the Western and Eastern Europe, the female university students are very sensitive to the basic human rights and are extremely critical to those who question their personal integrity and independent minds, including their autonomy in decisions regarding their own body and body parts. The fact, that the authors negate the right of autonomous decisions in these women, based on their financial dependence, may not be the best approach to the problem solving. I have got an impression the the authors are some kind of religious (read: moral) fundamentalists who do not live in the hard capitalistic world and country, where everything is for sell whatever is not strictly prohibited by the law (even this is for sell, if not properly controlled). After having read this debate, one could ask the following questions: a) are women of the same or different age, who are not university students, who do or do not earn money, more autonomous in their decisions regarding this matter (or should they be)?, b) why the physically and psychologically healthy female students or other women of the same (or different age) would not be able to make autonomous and reasonable decisions, only because they are not financially independent, if they have all necessay and relevant medical information before the surgical procedure?, c) does the perspective of earning money by selling ova in an otherwise responsible young female transform this person into an unreasonable, unresponsible, and uncompetent one?, and d) how can autonomy of the female university students increase by tutoring, supervising, and modifying their decisions by the family, friends, university administration, etc…? My opinion is that women (whoever is above 18), when it comes to that point, should be carefully and extensively informed about all the possible consequences of such an operation procedure, and that the final judgement and decision should be upon them, and not influenced by anybody or anything else. In this bloody world, the prevalent capitalistic doctrine says that for living everybody has to sell his/her best or possible: manufactured products, sex, sperm, illegal drugs, medicine, skills, knowledge, etc… etc… you name it. What is so different in selling ova and using this money to pay tuition (or clothes, or food, or rent, or anything else)? Are these people, who live in the “ivory towers” blind, or they live in some other world?

    Finally, I think that one of the concluding sentences in this debate, that says “In essence, young women, essentially our daughters, and in some cases our wives, who trade their genes for tuition, effectively, are being exploited”, is essentially and fundamentally wrong, because: a) nobody on this Earth feels exploited if propery and enough paid for the job willingly done or something willingly sold; how much – this may be a matter of offer, mutual agreement, custom, self respect, and - everybody’s dispute, b) nobody would sell any part of the body (including ova) if the university tuitions would be more acceptable to the financial possibilities of all the students, and not, increasingly, only to the rich students, and c) nobody would sell ova or any other body part if nobody would offer such kind of a trade to them. Blaming young university students and other women for selling their ova, and imposing restrictions to their personal integrity and autonomy in decisions, without considering other circumstances, in my view is just a bad shot.

    Competing interests

    No

  2. The Student and the ovum: Another Perspective

    Yakov Epstein, Rutgers University

    27 July 2004

    This paper deals with an important issue – one, that the Ethics Committee of the American Society for Reproductive Medicine has considered and for which it has written guidelines. (ASRM Ethics Committee (2000) Financial Incentives In Recruitment Of Oocyte Donors Fertility and Sterility, 74, (2) 216-220). Given that the ASRM Ethics Committee has deemed it necessary to have a committee consisting of scientists, jurists, and ethicists consider this issue, the topic of the paper “The student and the ovum” is clearly one that merits attention. The question is, however, do the considerations raised in this paper add to the considerations which the Ethics Committee has already written about? Strangely, the paper fails to refer to these guidelines and the authors do not frame their arguments in the context of what the ASRM has concluded with respect to this issue.

    The apparent stimulus to writing this paper is an event that the authors witnessed that caused them concern. They state:

    “Upon visiting a major university campus we were party to a conversation that arose among several students concerning methods of funding their education. One female student suggested egg (ovum) donation to pay for her tuition.” They continue: “Our initial thought when confronted with this bio-commercial option to affording tuition was, “How creative this young person must be and yet how desperate she must feel”. They conclude: “Female students concerned about tuition costs, who decide to submit to egg donation for remuneration to defray such costs, can neither make an autonomous choice nor give informed consent.”

    They offer the following reasons to support their assertion that college women cannot make an autonomous choice:

    “Even though female university students are young adults (or nearly so) they still may; (1) not retain a level of maturity to be sufficiently autonomous, (2) they may be truly ignorant of the social and physical consequences of submitting to anesthesia, surgery, medications, and loss of contact with their biological offspring, and (3) they may be exploited for their lack of financial means and coveted physical attributes”

    In other words, there are two areas of concern: (1) autonomy and (2) informed consent. Let’s look more critically at the author’s assertions. We start with autonomy.

    Autonomy.

    1. Maturity. What evidence is there that students do not retain the needed level of maturity? What proportion of students faced with this decision do not retain the needed level of maturity?

    The Ethical Guidelines of ASRM do not indicate a concern that students lack the necessary level of maturity. The fact that this doesn’t trouble the committee is not in itself a reason to dismiss this possibility. It simply means that after studying the issue, this was not something that either occurred to them or something which they believed was a problem.

    2. Ignorance of the social and physical consequences of submitting to anesthesia, surgery, medications, and loss of contact with their biological offspring

    Like the authors, the Ethical Guidelines of ASRM are concerned by this problem.

    (a) anesthesia: The Ethics committee does not consider this a risk worthy of discussing

    (b) surgery The committee states “Donors also are exposed to morbidity risks.” Indeed, the ethics committee elevates the concerns of the authors from a general concern about the “consequences of surgery” to the possible risk of “morbidity.” So this point has already been noted and is not new.

    (c) Medications The committee states “Although the data are unclear at this time, it is possible that fertility drugs and oocyte donation procedures could increase a woman’s future health risks, including the risk of impaired fertility.” Again, the authors’ point is well taken and has already been written about and offered as an issue that programs must be concerned about and take steps to avoid.

    (d) Loss of contact with biological offspring The committee states “In addition, they may underestimate the psychological and legal consequences of their agreement to forgo parental rights and future contact with children born to oocyte recipients.”

    3. Exploitation for their lack of financial means and coveted physical attributes

    Like the authors, the Ethical Guidelines of ASRM are concerned by this problem. They state: “financial incentives create the possibility of undue inducement and exploitation in the oocyte donation process. College students and other women may agree to provide oocytes in response to financial need. … Another ethical concern is that payment for oocytes implies that they are property or commodities and thus devalues human life. Many people believe that payment to individuals for reproductive and other tissues is inconsistent with maintaining important values related to respect for human life and dignity.” Once again, the authors’ points are well taken but these points have already been noted.

    Informed Consent

    The authors state: “The components of informed consent include voluntariness, competence, understanding, disclosure, and consent”

    Voluntariness: The authors conclude “Egg donation in the context that has been discussed is not coercive.” They do not provide any reason to believe that one who decides to donate has not volunteered.

    Competence and capacity. The authors state: “Even though the female university student is competent to make choices generally, she may lack the capacity to make this choice because she is in need of financial resources and she has been presented with a “fix” for her dilemma. Some students may be psychologically unable to refuse. A very powerful enticement has been placed at her feet. If she really does have other options (e.g., bank loans) she may take them. If she has a dearth of alternatives and is passive in nature she may decide in favor of donating her ova. She can make that choice, but, in fact, is not competent to choose.” So the authors assert that these generally competent people may not have competence in this particular area. Why?

    They offer: (1) “If she has a dearth of alternatives”. Is this really a likely situation? A Google search of sources of financial aid for college students produced numerous compilations of information. Here is a typical one (http://www.chiff.com/a/finaid101.htm) “Every year millions of students apply for and receive financial aid. Nearly half of all college students receive some form of financial assistance from the government, private scholarships or schools. Because college represents an investment in our most precious resource—our kids—no child who wants to go to college and is willing to work hard should be prevented by financial need.” They then list the possibilities for aid: Pell Grants, Work-Study Programs, Federal Loans, Perkins Loans, HOPE Scholarships, Lifetime Learning tax credits, Service in Americorps, the Merchant Marine Academy, the country’s domestic Peace Corps or in the Reserve Officer Training Corps (ROTC), The U.S. Army, Navy and Air Force. Given this list of possibilities, it is difficult to support the assertion that there is “a dearth of alternatives.” (Note: The physical risks associated with using a military alternative to pay for college are considerably greater than those from choosing to be an egg donor.)

    The authors of this paper further say: (2) if she is “is passive in nature.” According to Rosenberg and Epstein (Rosenberg, H. and Epstein, Y. (2001) Getting Pregnant When You Thought You Couldn’t NY: Warner Books, p. 275) “. We have interviewed about 2000 potential donors. Although each donor is a unique person, with a set of characteristics and experiences that are uniquely her own, we can make some generalizations about donors

    • Many donors have family or close friends who have experienced infertility or adoption.

    • Most donors have confidence that their bodies work right. In contrast to recipients, who often feel that their bodies "betray them", donors report that their bodies can withstand physical and emotional stress. Donors tell us that they are up and around the day after surgery or childbirth, that they never get sick, and require little sleep. They don’t worry about the drugs or the retrieval.

    • Many donors are physical risk takers. They state that their hobbies are ones like sky diving or rock climbing. In contrast, recipients often tell us that they are risk takers in life (like in business or their career or finance or even emotionally), but would not say they are physical risk takers

    Most donors report that they are content with their life and love their families. A typical college population scores about 11 on a widely used measure of depression, the Beck Depression Scale--they are depressed . College donors, in contrast, score under 5: they are not depressed. They report, for example, that they love their parents and are happy with their lives. Donors (ones that are accepted to be donors) are motivated only in part by the money they are paid. Donors are most often motivated by altruism or by healthy narcissism, or a little of both.” Certainly, the experiences reported by Rosenberg and Epstein looking at more than 2000 candidates suggest that those considering becoming an egg donor are anything but passive personalities!

    Next the authors turn to the issue of Understanding. They quote one authority as stating: “From the fact that actions are never fully informed, voluntary, or autonomous, it does not follow that they are never adequately informed, voluntary or autonomous” They go on to say “Other authors agree that full disclosure is not necessary, but that patients need only “adequate” information. In other words, enough information to make a reasonable decision in regard to an option presented.” So where is the problem? The authors offer a tortured logic of false beliefs culminating in the statement that

    “No matter what is disclosed and how well she comprehends the procedure she may be accepting a false premise that this financial decision will “cure” her situation. This decision may only solve her financial problems temporarily. She may have to undergo this procedure multiple times and face its multiple risks to acquire the financial resources needed to finish school. Therefore, the “cure” may not be “therapeutic” and may be physically and psychologically damaging. In this situation the lack of acceptance and false beliefs may invalidate consent to egg donation.” This is surely a straw man (straw woman or straw person?) argument that cannot be taken seriously.

    Finally, the authors turn to the issue of disclosure. The authors state that “There are three standards by which to measure disclosure: the professional practice standard, the reasonable person standard, and the subjective standard.’ They point out that “In regard to female students who wish to trade their ova for remuneration the question arises as to what is “material information” to a female university student? Can these students benefit from any information that is disclosed to them or have they already made up their mind when they approach the physician? Has their financial situation made them deferentially accept the physician’s recommendations without carefully weighing the risks and benefits? What is “material” for one person may not be so for another.” But does actual experience with egg donor candidates support these assertions? Rosenberg and Epstein published a study in 1995 (Follow-up study or anonymous ovum donors. Human Reproduction, 10 (10) 2741-2747) with a group of 74 former donors (47 college students and 27 members of the general community) and more recently published an article in the newsletter of the International Council on Infertility Information Dissemination (INCIID) http://www.inciid.org/newsletter/feb/index.html Egg Donation: What We Have Learned From A Decade Of Experience. INCIID Insights 1 (6) February/March, 2003, in which they described their experiences with donors for more than 10 years. In both this article and the Human Reproduction article they describe the process of orienting the donor so that she can make an informed decision. They state: “The donors come from two different populations: young mothers and college students. All of IVF New Jersey's donors are between the ages of 21 and 30. They all attend an informational seminar designed to familiarize them with important aspects of egg donation. The seminars are conducted jointly by one of the IVF New Jersey physicians and by Helane Rosenberg, the IVF New Jersey egg donor coordinator. At the seminar the potential candidates learn about the medical and logistical aspects of egg donation. They are apprised of the risks involved and encouraged not to do a procedure if they feel uncomfortable with these risks or if doing a procedure would cause them conflicts with significant others (spouse, boyfriend, or parent). Further, they are encouraged to consult their own physician to get a second opinion about the medical advisability of doing an egg donor procedure. They receive an informational packet that contains literature about research on the relation between infertility medical procedures and the risks of ovarian cancer. At the seminar, they ask questions and fill out forms with demographic and contact information. They are told that they will be contacted after the seminar to discuss their interest further and to be interviewed in depth if they would like to continue to consider being a donor. Finally, they are told that if they go home and think about whether they are comfortable deciding to donate and if they are not, to please tell the person calling that they do not want to donate. Many candidates indeed decide they are not willing to donate and are thanked for coming to find out about the procedure. No candidate is ever pressured to reconsider.

    Interested candidates have a skilled clinical interview about their comfort and motivation to become a donor. Any candidate who shows evidence of psychological instability or any of the other features that the ASRM task force on egg donation has indicated as risk factors that should disqualify a candidate is eliminated from the pool of potential candidates. In contrast to other practices that administer the MMPI (Minnesota Multiphasic Psychological Inventory), we do not use this instrument as a screening device. The decision to do so is one of the things we learned over the decade of working with donors. When we began working with donors we did use the MMPI. But we did not find it useful in discriminating between good and poor donor candidates. Rather, we found that a skillful clinical interview was the best way to choose appropriate candidates.“ Note, Rosenberg and Epstein report that many candidates decide after being oriented in the way that is done in the procedure they describe, that they have changed their minds and decided not to consider this option further.

    The procedure described by Rosenberg and Epstein is in line with the recommendations of the Ethics Committee of the ASRM. This committee advocates that:

    “To discourage improper decisions to donate oocytes, programs should adopt an effective information disclosure and counseling process. Regardless of how prospective donors are recruited, programs should ensure that they receive accurate and meaningful information on the potential physical, psychological, and legal effects of oocyte retrieval and donation. The potential negative health and psychological consequences should be openly acknowledged. Prospective donors should understand the measures they must take to avoid unwanted pregnancy during a stimulation cycle. They also should understand that they could later develop desires to establish contact with genetically related children, desires that may be difficult or impossible to satisfy because of legal or other barriers.

    Donor candidates should be encouraged to explore their possible emotional responses, particularly those that could develop if they have infertility problems themselves. To reduce the incidence of subsequent psychological problems, it would be prudent to limit donors to those who are 21 or older and have the emotional maturity to make such decisions.

    To enhance the likelihood that information relevant to donation will be fully explored, programs are encouraged to designate an individual with psychological training and expertise to counsel prospective donors. This individual’s primary responsibilities are to ensure that the prospective oocyte donor understands and appreciates the relevant information and feels free to decide against donation if doubts arise at any point before completion of the procedure. The prospective donor’s motivation should be explored during the session, with the goal of ascertaining whether she fails to appreciate the full consequences of her donation or is improperly discounting the risks because of her economic status or infertility problems. Counseling also should be provided to donor couples in oocyte-sharing programs to promote informed and voluntary decisions.”

    Another point. The apparent stimulus for this article was one overheard conversation amongst students on a college campus. I would like to offer some contrasting anecdotal evidence. Several years ago I co-taught an honors course at my university titled “Fertility and Infertility in Contemporary American Society.” One assignment given the dozen students (10 females and 2 males) was to conduct interviews (each with 10 students) about their views on donating gametes (the males interviewed males as potential sperm donors and the females interviewed females about the possibility of becoming egg donors.) Several telling findings emerged. First, most of the women had seen ads about opportunities to donate and receive considerable sums of money for this action. Second, and more pertinent, most stated that they would never donate. The interviewers probed as to why they would not donate. The interviewees had many reasons: some were scared by the medications or the possibility of impaired fertility. But the most often stated answer was that they were “turned off” by the high sums of money being offered. This may sound paradoxical but it makes perfect sense when considering Festinger’s theory of cognitive dissonance.(Festinger, L. (1957) A Theory of Cognitive Dissonance. Evanston, IL: Row, Peterson) In one famous study (Festinger, L. & Carlsmith, J.M., (1959) Cognitive consequences of forced compliance. Journal of Abnormal and Social Psychology, 58, 203-210), Festinger found data supporting what has later been called the “Less Leads to More effect” (see Baron, R. and Byrne, D. (1991) Social Psychology: 6th Edition. Needham Heights p. 169). The notion is that people need appropriate conditions to support the decisions that they make. If a woman wants to believe that she is being an egg donor for altruistic reasons, she can do so if the remuneration is small enough to discount this as the reason for donating. But if the payment is too great, she has to acknowledge that she is doing it for the money and this is an uncomfortable acknowledgement. The interviewees told our student interviewers that they decided that if they became egg donors for a large sum of money they would view themselves as “hookers” or something similar.

    So why is IVF New Jersey able to locate so many donors? The answer is that the money is not their primary motive for donating. Of course being paid is helpful but donors tell us that the money by itself would not be a sufficient motive to donate. On the other hand, most would not consider donating if no money was offered.

    Before concluding, let me share an anecdote of my own to match the anecdote that stimulated “The student and the ovum”. For the past 12 years, my wife and I have been counseling couples about their selection of anonymous egg donors. Over the course of that time, the women who have been paid to donate their eggs have helped to create nearly 1000 babies. My wife and I are currently conducting interviews with about 100 egg recipients (some of whom have children that are 10 years old) to learn about the experiences of the egg recipients who had babies using this procedure and what their families are like. The paid donors these women used included some college students but an even greater number of women who had children of their own. Among the recipients we have counseled are a number of persons who came from European, African, and Asian countries. I have just returned from a trip to the UK. The purpose of my trip was to interview several couples who came to the US to find an egg donor. They came to the US because in the UK, they are not allowed to pay an egg donor – the sort of situation that Papadimos and Papadimos are advocating. We talked with these couples as they held their babies in their laps. We listened to their tales of woe as they described how doctors in the UK told them they needed an egg donor and how they went on the waiting list of their clinics. They waited years and were unable to find a donor. Why? Because without financial incentive women won’t donate. Our interviewees and their husbands told us how grateful they were that they had the opportunity to come to the United States to get a donor who allowed them to have the life-changing experience of these babies they were now joyfully bouncing on their laps. And upon leaving the last interview, we returned to our hotel and picked up a London newspaper where we read an advertisement by a couple pleading desperately for a kind woman to donate eggs to give them the gift of life they so much wished for-the gift our interviewees received because they paid for it. It is one thing to write an abstract theoretical piece as Papadimos and Papadimos do and quite another to meet with the real-life objects of that concern and experience first-hand the other side of the story.

    Competing interests

    No competing interests

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