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Ethical issues in infertility treatment
Best Practice & Research Clinical Obstetrics & Gynaecology, 6, 26, pages 853 - 863
Two currently contentious domains in infertility treatment are discussed: assisted reproduction for same-sex couples and fertility preservation for women with cancer. Despite an increasing recognition of the rights of same-sex couples, in many countries they are still not eligible for assisted reproductive technology. The main justification for excluding same-sex couples from treatment is that the welfare of the future children would be compromised. Empirical evidence, however, shows that this is not the case. Another group of non-infertile women seeking assistance from reproductive medicine are women with cancer who are at risk of impaired or lost fertility as a result of their illness or cancer treatment. In this field, the future holds many promising options. Several of these, however, are currently in an experimental phase, which elicits ethical concerns about participant recruitment and research participation of children.
Keywords: ART, bioethics, fertility preservation, same-sex parents.
Ethical issues in infertility treatment are plentiful. In this chapter, we begin with a short introduction to normative ethics to clarify the role of ethical rules and principles in the discussion. We will illustrate this by focusing on two current themes: same-sex parenting and fertility preservation.
In normative ethics, one tries to answer the question ‘what should I do?’ Among the numerous schools or approaches in normative ethics, the two most important lines are deontological and consequentialist theories. In deontological theories, an act (e.g. a decision) is right when it is in accordance with a moral rule or principle. This is purely a formal principle, as it does not tell us anything about the rules or principles themselves. The rules are specified by referring to reason, natural law or God. Those who focus on reason and rationality mostly refer to human rights. The human rights, as listed in the Universal Declaration of Human Rights, are prime examples of rules that would be the object of choice of all rational beings. So, a person acts rightly when he abides by the rules and respects the rights of persons.
The biggest problem for deontologists is to determine what the rights and duties of a person are. Given the fact that they rely on different foundations, there will be no consensus among them. People who refer to nature will, for instance, argue that same-sex parenting is unnatural and that, therefore, homosexuals should not have a right to procreate. In a similar vein, women should not be allowed to cryopreserve oocytes in order to counter age-onset (and thus ‘natural’) infertility, but they should be allowed to do so in order to counter infertility that is induced by cancer treatment (and thus ‘unnatural’). Religious people will condemn any act that goes against the rules laid on us by God. All main religions reject homosexuality and exclude same-sex couples from assisted reproduction. Deontology does not necessarily lead to a more conservative position. Deontologists who refer to reason and rationality may well defend the rights of homosexuals or the right to cryopreserve oocytes for non-medical reasons. They may emphasise the principle of respect for autonomy and more specifically the right to reproduce. 1 In these theories, consequences count but they are never decisive in the determination of a right action. When the consequences would be very bad, the deontologist will likely conclude that some rights of the persons (e.g. the so-called birth rights of the child) are violated and that, therefore, reproduction in these circumstances should be condemned. 2
Consequentialist theories, on the contrary, focus on the consequences of the acts. Its main version is utilitarianism: an act is good when it maximises utility (generally interpreted as happiness, well-being or quality of life). This is a demanding theory, because the maximisation condition requires one to compare all possible acts that one could perform and because one should calculate the balance of the positive and negative consequences for all parties involved. By focusing on the consequences, this theory relies heavily on the human sciences to provide the necessary empirical information. Psychology, sociology and other sciences can tell us whether a certain intervention is harmful or beneficial to the people involved. The ‘welfare of the child’ is a typical consequentialist argument. In the public debate, one frequently takes only the effects on the children into account while the theory demands the inclusion of all parties, including parents and doctors, for example. Denial of fertility treatment may have huge negative consequences on the lives of the would-be parents. This effect too should be part of the utilitarian calculation.
We have defended a weakened version of utilitarianism in previous work. 3 This version is a type of sufficientarianism in which one tries to ensure that people do not fall below a specific threshold, frequently placed at the level of ‘reasonably good health’. 4 The reason for this adaptation is that the maximising condition leads to highly counter-intuitive moral judgments. It would mean, in practice, that nobody should knowingly and intentionally bring a child into the world in less than ideal circumstances. Indirectly, that also implies that medical specialists should not help people to realise their child wish in case they cannot procreate on their own. As ideal circumstances are only seldom present, the overwhelming majority of the population should refrain from procreation. To avoid this conclusion, we defend the position that procreation (and assistance to procreation) is morally acceptable when the future child will have a reasonably happy life. Although different definitions can be found as to what constitutes a decent welfare level, the common core of these definitions is that a person has a reasonable life quality when the person has the abilities and opportunities to realise those life plans that in general make human life valuable.
Homosexuality is a highly contentious issue in many countries. It stirs strong emotions and causes heated debates, especially when combined with reproduction. Although discrimination of people on the basis of sexual orientation is condemned in most declarations on human rights, the enforcement of this rule on the ground is much less convincing. A slow evolution is taking place in Europe and the USA towards a certain legal recognition of homosexual relationships, in the form of a registered partnership or semi-marriage; however, this recognition is essentially top-down. The European parliament advocates the extension of marriage-like status for same-sex couples, and takes steps to avoid discrimination of citizens on the basis of sexual orientation. Not all member states, however, are eager to include this extension into their national legislation. 5
The acceptance of same-sex parenting proves to be even more challenging than acceptance of same-sex marriage. Haimes 6 explained that lesbian parents transgress several boundaries simultaneously: ‘the ideological, because of its apparent flouting of the importance of fathers; the structural because of its advocacy of either one-parent or two-mother households; and the biogenetic, because of its avoidance of sexual intercourse’. 6 The same applies, in an even stronger way, to gay men. In the mean time, homosexual households are here to stay. In the USA, 594,000 same-gender households were recorded in 2010. 7 Out of these households, 115,000 reported having children and 73% of these had only biological children. More and more homosexual, and especially lesbian, couples take the step toward medically assisted reproduction in order to have a child within their relationship. In some countries, such as the UK, the new law allows both partners in lesbian and gay couples to be registered as the legal parents of the child. 8
Empirical evidence on the welfare of the child
When people discuss alternative family formations, the focus is almost always on the welfare of the child. This is remarkable because the emphasis in the debate on the acceptability of techniques for medically assisted reproduction is normally on the parents. The move from heterosexual to non-heterosexual families clearly triggers different concerns. The reason for this shift is that reproduction in a setting that does not conform to the heterosexual married parents with their genetic children is assumed to have negative consequences for the children. 9 This argument is split into several more specific parts. We will discuss three parts: (1) a child needs a mother and a father; (2) the children will become homosexual; and (3) homosexuals have more psychological problems.
A child needs a mother and father
The first and most difficult point is the belief that a child needs a mother and a father. According to the opponents of same-sex parenting, children need dual-gender parents to learn appropriate gender-role behaviour and to develop normally. 10 Although this claim seems intuitively plausible, there is little evidence to support it. For decades, a debate raged on the UK on the need of the child for a father. This clause was originally part of the ‘welfare of the child’ clause in the Code of Practice of the Human Fertilisation and Embryology Authority. 11 The conclusion of the debate was that the presence of a father is not essential and that the absence of a father does not causes significant harm to the child. Interestingly, the clause about the father has been replaced in the new Code of Practice by the need for ‘supportive parenting’. Up till now, we have not seen any debate about the child's ‘need for a mother’. Everyone seems to accept this as self-evident but, if it is, then the discussion on parenting by gay couples is closed before it even starts. Some studies suggest that the outcome for the children and the quality of the parent–child interaction can be explained by the gender of the parents rather than by their sexual orientation.12 and 13At the moment, we know relatively little about gay fathers, and the existing studies are mostly limited to gay men who became fathers in a heterosexual relationship or who adopted a child. This situation introduces several confounding variables that influence family dynamics, such as family conflict and divorce, and renders the findings difficult to extrapolate to the situation where two men decide to father within their relationship. While lesbians are struggling with the moral views and prejudices in society, gay men undoubtedly have a manifold harder time convincing people of the acceptability of their wish to parent. Especially gay men have to fight against a culture of homophobia and heterosexism that considers a ‘gay father’ as a contradiction in terms. The idea that gay men should not be in close contact with children and that men in general are unfit to raise a child also pervades. 14
Children raised in homosexual families are more likely to become homosexual
The argument that children raised in homosexual families are more likely to become homosexual themselves would not be an argument unless one assumes that being homosexual is a type of harm. For a long time, homosexuality was considered a mental illness. It certainly is a disadvantage, but this disadvantage is almost completely due to hostile reactions from a homophobic society. It is ironic that, especially in highly homophobic countries like Islamic countries, discrimination is used to reinforce discrimination. Samani et al. 15 argue that putting a child in a homosexual family in a homophobic society is harmful to the welfare of the child. This is no doubt correct, but this harm is conditional on the attitude of society. A condition is a handicap or disability when it prevents people from doing things that most people consider important in life, and which are part of normal functioning. Societal reactions frequently come on top of that, but that is the part that we, as a democratic society, try to amend based on respect and equality. Regardless of the evaluation of this disadvantage, the only longitudinal study carried out on the prevalence of homosexuality reports no statistical difference in sexual orientation between children raised in homosexual and heterosexual families. 16
A recent study on gender identity in children in heterosexual and lesbian families did not support the ‘no difference’ consensus. 17 They found that children in lesbian families feel less parental pressure to conform to gender stereotypes, are less likely to consider their own sex as superior, and are more likely to question future heterosexual involvement.
Homosexuals have more psychological problems
Homosexual people suffer more from certain psychiatric disorders. Studies indicate that both gay and lesbian people have more mental and physical problems than the general population. 18 Theoretically, characteristics such as depression and substance abuse may have a detrimental effect on parental competence, and they are a reason for concern. Such findings, however, have to be interpreted with caution. First, it is revealing that the ‘best interest of the child’ standard is used inconsistently. Although numerous clinics are banning postmenopausal women, lesbian couples and other contentious groups, these very same clinics accept a high multiple pregnancy rate. The risks of these parents for the children pale into insignificance when compared with the risks involved in being born as part of a multiple pregnancy. 19 Second, although some characteristics may be present in a certain group, these studies do not always indicate (most do not) whether this also applies to parents in that group. Finally, the greater prevalence rate of these characteristics does not justify a blanket exclusion of homosexuals. If these characteristics are detrimental to the psychological development of the children, we would have found this by now in the studies. The evidence, however, indicates that the psychosocial development of the children and the quality of parenting in homosexual families do not differ from heterosexual families. 20
Ideological bias in research
Research on same-sex parenting has been criticised for being biased either for or against homosexual parenthood. The opponents of gay parenting, in particular, claim that many existing studies are methodologically flawed. Most studies are carried out by researchers sympathetic to homosexual people and they strongly emphasise the ‘no difference’ view: more similarities than dissimilarities exist between heterosexual and homosexual parents and, whatever differences there are, they are unimportant or irrelevant. We want to give one example to illustrate this attitude: ‘The fact that none of them [studies] indicated that the offspring of lesbian mothers had worse emotional functioning or more behavioural problems than other children supports the notion that the offspring of lesbian mothers do not suffer more than other children’. 21 These researchers are extremely cautious when they present data about differences because, whether they like it or not, these data will have a direct effect on policy decisions and legislative initiatives regarding custody, adoption and access to medical assistance in reproduction. Differences turn into deficits. 22 Researchers downplay findings indicating differences between children raised in homosexual families and children raised in heterosexual families. The bias, however, goes deeper. Owing to the pervasiveness of social prejudice and discrimination against homosexuals, even research that is blamed for being too pro-homosexuality is directed at detrimental effects and possible risk factors. 13 This highly defensive position of researchers leads to an impoverished approach. They are missing chances to study family development in different settings and to learn more about the mechanisms underlying these processes. 23 In fact, these alternative families offer unique opportunities to explore the formation of gender identity and sexual identity. 13
Most studies on children in lesbian families have used heterosexual families as control groups. This is standard practice in experimental design: the influence of the variable (parental sexual orientation, gender, or both) is determined by looking at the variable in different settings. The problem is that, because of the homophobic atmosphere and heterosexist rule, the control group (i.e. heterosexual family) is perceived as the gold standard. As a consequence, when a group does not reach the same level of performance as the control group, it is automatically classified as sub-standard or inferior, and consequently, should not have access to medically assisted reproduction. This reasoning is based on several underlying premises that are hard to defend. First, it assumes the rightness of the maximum welfare standard between family types, and we have shown above that this standard cannot be maintained. Second, a lower quality of life of the children does not automatically mean an unacceptable quality of life. Sufficientarianism relies on a threshold system: children should not be created in family types that present a high risk of serious harm for the child. Finally, the significant differences in self-esteem and psychological well-being that were actually found between children in lesbian families and heterosexual families were in favour of lesbian parents. 13 The conclusion from this finding would be that heterosexual couples should not have access to assisted reproductive technology. We have never met anyone willing to accept this conclusion. But if one rejects it, one needs to explain why that conclusion can be drawn when children in lesbian or gay families are doing worse.
We conclude that we need to measure psychosocial development and cognitive capacities without reference to heterosexual families. Our concern should not be whether one type of family or one kind of parent is better than the others. We should determine which parents and families have a high risk of serious negative outcomes for their children and what we can do about this.
Fertility preservation for people with cancer
A relatively new field of assisted reproductive technology deals with the prevention of infertility in people with cancer, and is increasingly known under the name of ‘oncofertility’. The fertility of people with cancer can be threatened by the disease itself or by the radiotherapy or chemotherapy that they receive in order to survive. For men, treatment with alkylating agents and radiotherapy can lead to subfertility. The chances of a good recovery of the reproductive system depend on the type of treatment and the doses. Women who receive pelvic irradiation or treatment with alkylating agents are at risk of acute ovarian failure, premature menopause and pregnancy complications. Both chemotherapy and radiotherapy deplete the number of follicles in the ovaries, and high doses of irradiation cause permanent damage to the uterus. Also, for women, the effect of treatment on fertility varies greatly, with some treatments leading almost certainly to immediate menopause, whereas others may advance the time of onset of menopause by a couple of years, but do not severely impair the patient's reproductive options. 24
The most common proactive measure that can be taken by men is sperm cryopreservation, a procedure that is established, simple and cheap. If sperm cannot be obtained by masturbation, epididymal aspiration or testicular biopsy can be carried out. For men who are unable to produce sperm and for prepubertal boys, testicular tissue can be obtained and frozen. This tissue can then be autografted back to the patient after his recovery, be xenografted (in order to obtain gametes for in-vitro fertilisation) or the stem cells present in the tissue might be retransplanted. All of these options are currently experimental, and neither their safety nor their efficiency has been established. 24 Possible proactive measures for women include transposition of ovaries, embryo cryopreservation, oocyte cryopreservation, ovarian tissue cryopreservation or concomitant treatment with gonadotropin-releasing hormone analogues. 24 Embryo cryopreservation and transposition of the ovaries outside the radiation area are the only established methods. Embryo cryopreservation, however, is only available for women who have the time to undergo an ovarian stimulation cycle and who are in a committed relationship, or who are willing to use donor sperm. Oocyte cryopreservation is available for adult women who, again, do not need urgent treatment and can thus undergo ovarian stimulation. Currently, oocyte cryopreservation is still considered experimental; however, as the body of data about its efficiency and safety is steadily growing, it will probably be considered an established procedure soon. 25 Prepubertal girls only have the option of harvesting ovarian tissue and freezing either isolated primordial follicles, cortical strips or the whole ovary with the vascular pedicle. When strips are frozen, they can be autografted orthotopic (which may lead to spontaneous pregnancies) or heterotopic (which will require in-vitro fertilisation). Although several live births have been reported, this option is still experimental, and the main risk is the reintroduction of malignant cells, which is a concern particularly for leukaemia, non-Hodgkin's lymphoma and ovarian cancer. Also, the average lifespan of a transplant is only 3 years. 26 Concomitant treatment with GnRH analogues is a much offered option, although the current data about its efficiency are inconclusive.
Should fertility preservation measures be offered to people with cancer?
A number of convincing arguments plead for offering fertility-saving interventions. First and most importantly, everyone has aprima facieright to reproduce. Reproductive liberty is generally seen as an important basic human right and, therefore, if someone's fertility is threatened, he or she should be able to take measures in order to preserve it. This widely acknowledged right has two important limitations, however: (1) it is a liberty right rather than a claim right 1 ; and (2) it is not an absolute right, but one that can be outweighed by other rights. The first limitation boils down to the fact that, although people cannot be hindered in pursuing genetic parenthood, there is no moral obligation that society should actively help them accomplish this goal if the effort is deemed disproportionate. The second limitation, the fact that reproductive liberty is a relative right, means that it will need to be weighed against other factors, for example the welfare of the resulting child.
Another argument in favour of offering fertility-preservation measures to people with cancer is that ‘there is a duty to prevent damage or repair that which is damaged by treatment, when possible,’ 27 based on the ethical principle of non-maleficence. If we accept that clinicians have a duty to repair what they damage in the course of medical treatment, then this means that, in this particular context, reproductive liberty becomes a claim right or positive right, rather than a liberty or negative right.
A last argument for why it is important to offer fertility preservation to people with cancer is that a project for the future (the prospect of building a family) offers hope for overcoming the disease that the patient is battling with. From this perspective, even if certain experimental procedures, such as testicular tissue cryopreservation, do not deliver on their promise, the intervention may still offer the individual a therapeutic or psychological benefit.
Criticisms against fertility preservation in people with cancer can be reduced to four main arguments: (1) fertility preservation is not in the best interest of the individual; (2) fertility preservation is not in the best interest of the future child; (3) fertility preservation does not represent the best allocation of scarce resources in healthcare and research; and (4) fertility preservation interventions reinforce societal dogmas that ought to be questioned.
Fertility preservation is not in the best interest of the patient
Fertility-preservation measures often hold a number of risks for the individual. Sperm cryopreservation is the main exception, although, even in this case, there may be some treatment delay if the recommendation is followed that three samples are banked with an abstinence period of 48 h between each of the samples. 28 When ovarian stimulation is needed, either to cryopreserve oocytes or embryos, there will be treatment delay of 2–3 weeks when one stimulation cycle is carried out or longer when several stimulation cycles are carried out. Other risks are surgical complications, ovarian hyperstimulation syndrome, diminished ovarian reserve (when an entire ovary is removed), and possible reintroduction of malignant cells.
Besides the risks for the patient, fertility preservation can also be seen as giving false hope to the patients. A number of the procedures are still experimental and, therefore, some interventions may turn out to be useless. Also, with the exception of the use of cryopreserved sperm, the success rates of eventually establishing a pregnancy are rather low. Sometimes, the risk of postponing treatment will have to be weighed against the risk of not storing enough tissue to obtain a reasonable chance of success.
Taking these three elements: risks, low success rates, and experimental status together, it becomes clear that fertility preservation is not always in the best interest of the patient.
Fertility preservation is not in the best interest of the future child
This second objection can be founded on two different elements: first, the fear that the children of people with cancer would inherit the disease or suffer from other physical adverse effects; and second, that these children are at an increased risk of losing a parent early in life.
On the basis of the reasonable welfare standard (rather than the maximum welfare standard), neither of these arguments seem convincing enough to abandon fertility preservation for people with cancer all together. Although genetic components are at play in many types of cancer, in most cases, the inheritance of an affected gene results in an increased predisposition to develop the disease, not in the disease itself. Moreover, for some specific cancers in which penetrance is high (e.g. for certain mutations in the adenomatous polyposis coli gene), there is always the option of performing pre-genetic diagnosis before transferring embryos back to the uterus.
As far as the risk of losing a parent early in life is concerned, this is a risk that every newborn faces. Although people with cancer generally have a higher risk than the general population that disease will recur, and that it may be fatal, this increase is, as also noted by the American Society for Reproductive Medicine, 31 not prohibitively high. Second, also in this case, the situation can be re-evaluated at the time of embryo transfer. If a woman has not recovered from the disease after radiotherapy or chemotherapy, reluctance from the fertility doctor to transfer embryos may be warranted; however, excluding all people with cancer from taking fertility-preserving measures from the onset would be out of proportion.
Fertility-preservation does not represent the best allocation of scarce resources
This third objection can be either directed against assisted reproductive technology in general, or specifically against fertility preservation in people with cancer. It primarily attacks public funding of fertility-preserving interventions. In countries that are struggling to provide their citizens with basic, life-saving healthcare, it is indeed unrealistic to expect funding for sperm and oocyte cryopreservation, and certainly for more expensive and experimental procedures such as ovarian and testicular tissue cryopreservation. In countries in which generous policies exist for public funding of infertility treatments, it seems logical that measures to prevent future infertility are also covered.
The objection to fertility preservation in people with cancer, in particular, is more nuanced. As mentioned, in this category of individuals, the success rates may be low because of a limited amount of stored tissue, but also because the usage rates are likely to be low. Some women will not survive, others will remain fertile or will eventually choose not to pursue parenthood. Reported usage rates of cryopreserved sperm, for example, rarely rise above 5%.32, 33, and 34The relative ease with which sperm can be frozen may be a reason why male men with cancer opt to freeze their semen, even if the chances of ever using it is low. The usage rate of cryopreserved oocytes may be higher, but the difference is unlikely to be enormous. Thus, if expensive interventions are carried out that only pay off in a limited number of cases, these interventions are all but cost-effective.
Fertility-preservation interventions reinforce societal dogmas that ought to be questioned
The final objection that fertility-preservation interventions reinforce societal dogmas is mainly found in feminist literature. It sheds a light on the presuppositions that underlie the practice of fertility preservation, namely, that parenthood is an essential component of a person's life, that parenthood makes people happier and that families based on genetic relatedness are better than other forms of family building. 35 If one does not cling to these presuppositions, a solution to the problem of disease or treatment-induced infertility would be to counsel individuals about the fact that infertility does not necessarily affect their quality of life and future happiness, and that other options exist besides genetic parenthood (e.g. adoption or donor conception. 36 ) One can endorse the fact that these societal dogma's ought to be questioned more often and that alternative ways of becoming a parent should be discussed with patients, but still defend fertility preservation for people with cancer. If an individual has adopted and internalised these ideas about parenthood, they effectively represent their personal values.
As these different arguments before and against show, whether fertility preservation should be offered to people with cancer or not will depend on a number of factors that differ from case to case. Therefore, we can only conclude that, although there is no moral imperative to offer fertility preservation to all people with cancer, it should nevertheless be offered to some of them. Before offering fertility preservation, it is up to the treating physician to ensure that the risks are not prohibitively high and that the utility is not prohibitively low. This is not an easy task, as there are more probabilities than certainties that need to be balance. These include the risk of becoming infertile after cancer treatment; the risk of fertility-preservation intervention for the individual; the chance of survival of the individual; and the chance that the individual will want to use the frozen material or will be able to do so; the chance of establishing a healthy live birth with the frozen material. It is the clinician's duty to rule out any unnecessary or prohibitively risky procedures. For all the cases that fall within the grey zone where fertility preservation may or may not be useful, however, the different options (including alternatives to fertility preservation) should be discussed with the patient so that he or she can make an informed, autonomous decision about whether or not to carry out any fertility-preservation interventions.
Can experimental treatments be offered?
Fertility preservation for people with cancer is a relatively young field, and many of the interventions that are discussed are not established medical procedures, but should be regarded as experimental. This is certainly the case for testicular tissue cryopreservation (which has not yet led to a live birth), for ovarian tissue cryopreservation (which has led to a handful of live births) 37 and for the administration of GnRH analogues (of which the efficiency remains unproven).38, 39, and 40Only sperm cryopreservation, embryo cryopreservation and ovarian transposition (transposing the ovaries outside the radiation field) are established procedures, and oocyte cryopreservation is increasingly being considered as an established rather than an experimental procedure. 25 In principle, preference should be given to established procedures rather than experimental ones when treating patients. These established options may not be possible, however, and may depend on the characteristics of the individual and of the disease. Or, the individual may esteem experimental treatments to be better options, despite their experimental status. For example, prepubertal boys and girls do not have the option of cryopreserving semen or embryos and for women without a partner, oocyte cryopreservation will often be a more attractive option than embryo cryopreservation after donor insemination.
In order for these experimental treatments to reach the status of evidence-based medicine, a number of steps need to be taken before starting clinical trials, such as animal studies and embryo research. 41 Also, when clinical trials are started to follow up on animal studies and embryo research, there is aprima faciepreference for recruiting healthy volunteers (e.g. women who request oocyte cryopreservation as a fertility-preserving measure against reproductive aging), rather than women who have just been confronted with a cancer diagnosis. One might, therefore, say that it is unwise, or in fact even unethical, to offer experimental fertility-preservation interventions to people with cancer at this point in time.
Strong counter-arguments, however, can be made. When the risks of an experimental procedure are small, the possible benefit is great and valid alternatives are absent, offering experimental procedures may be warranted. Normally, risks cannot be assessed before pre-clinical trials have been carried out. Fertility-preserving interventions, however, in which tissue is removed before cancer treatment in order to transplant tissue or embryos back after treatment are special in the sense that there are two steps that are clearly distinct in time. Most of the risks and uncertainties are connected to the second step, as the tissue removal is in itself an established procedure. The cryopreservation of ovarian and testicular tissue is also still in an experimental phase, but this only poses a possible risk for the individual at the time of transplant. By the time the second step is carried out, the efficacy and safety of both the cryopreservation method and transplantation procedure may be established. Moreover, the person with cancer will no longer be in the precarious situation that he or she is in at the time of tissue removal as he or she will have survived cancer by that time.
So is it unethical to offer experimental fertility-preserving procedures to people with cancer? Not necessarily, but this cannot be a justification for foregoing the steps needed to confirm the validity of these procedures and to optimise them. Therefore, experimental treatments should only be offered in a research context, meaning that registers are kept, that negative outcomes are reported and that there is ethics committee oversight. Also, the individual should receive clear information about the distinction between research and treatment, and about the limitations and uncertainties of the intervention. Furthermore, only those individual should be recruited for whom there is a reasonable chance of benefit and for whom the risks (e.g. treatment delay) are minimal.
A category of individuals that requires special attention are young boys and girls that have not yet reached puberty.
For these individuals, only experimental procedures are currently available, and they are unable to give an informed consent as they are incompetent by definition. This could easily lead to the conclusion that these individuals should be excluded from fertility-preserving interventions. The Declaration of Helsinki, however, unlike the Nuremberg code, does not exclude children from researchper se, as long as risks and burdens are minimal and that, whenever possible, assent of the minor is sought (in addition to consent by the legal representative) and dissent is respected. 42 This means that fertility-preservation interventions on children are justified if the risks are minimal, if the child is likely to benefit and if it accepts to participate in the research, while having a rudimentary understanding of the procedures and a basic comprehension of the general purpose of the research.
All parties agree that the welfare of the children created and raised in different family structures is of paramount importance. We have defended the ‘reasonable welfare’ standard as the most appropriate threshold to decide whether creating and raising children in certain family types is morally acceptable. This implies a rejection of the comparative analysis that takes heterosexual families as the gold standard. The main arguments against same-sex parenting (children need a mother and a father, children have a higher chance of becoming homosexual, and same-sex people suffer more from psychiatric disorders) have limited strength. Doubts, however, can be raised about the real importance of the welfare of the child within the belief structure of many people. Most people do not change their minds about the acceptability of family building by same-sex parents when empirical evidence points in a direction that contradicts their beliefs. Most people will condemn same-sex parenting based on deontological considerations such as unnaturalness.
Another group of non-infertile people seeking assistance from reproductive medicine are cancer patients who are at risk of impaired or lost fertility caused by their illness or cancer treatment. In this field, the future holds many promising options; however, amidst this optimism, clinicians and patients should not lose sight of the shortcomings of fertility preservation. Many fertility-preservation interventions are still experimental at present, which means that the offer of such interventions should take place within a research setting, rather than a clinical setting and that the patient should be well aware of this.
Conflict of interest
- The distinction between deontological and utilitarian theories must be kept in mind when listening to the arguments in the ethical debate.
- The welfare of the child in different family types should be studied independently to determine whether it reaches the reasonable welfare standard.
- No comparison should be made with heterosexual families to avoid presenting the latter as the gold standard.
- Many possible interventions aimed at fertility preservation are still in an experimental phase at present.
- The numerous arguments for and against need to be weighed in each individual case in order to determine whether performing a fertility-preserving intervention is justified.
- Ethical concerns are most abundant when prepubertal children are concerned.
- Studies on alternative families should focus more on those points where differences might be expected, such as gender and sexual identity.
- Data gathering on the effect of specific cancer treatments on fertility, and the efficiency and safety of fertility preserving interventions is necessary in order to improve clinical and ethical decision making.
- Research on how best to obtain an informed assent from children for fertility preservation is needed.
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Bioethics Institute Ghent, Ghent University, Blandijnberg 2, Gent 9000, Belgium
∗ Corresponding author. Tel.: +32 92643970; Fax: +32 92644187.
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