Introduction

The interplay between psychological and ethical issues continues to shape and define the role and responsibilities of professionals in the field of ART. Advances in ART have brought the process of creating a child some distance from nature, enabling physicians to offer patients a variety of permutations in terms of conceiving and carrying offspring. Women can be stimulated to produce multiple oocytes, resulting in multiple births that would not otherwise have occurred. Patients can receive donor gametes – eggs and/or sperm or embryos – to create children who (from a genetic point of view) would not otherwise have been created and whose genetic makeup does not reflect their own. Patients can freeze gametes for future family building that challenge the parameters of natural reproductive ability and can even be used posthumously.

Professionals are ethically challenged to stay informed about rapidly changing medical treatments and technologies to help patients understand and navigate medical systems and make informed decisions about their reproductive care. Ethical issues that once required psychological consultation such as multifetal pregnancy reduction and embryo disposition are becoming less problematic with the global shift to single ETs and offerings of oocyte cryopreservation, which allow women to freeze their gametes without creating embryos. Oocyte cryopreservation brings its own new ethical quandaries. The overlap between ethical dilemmas, how patients psychologically experience these issues, and the ethical positions of clinics and practitioners, are a part of the ongoing relationships and responsibilities of professionals in the field.

Reproductive technology has a wide-ranging impact on donors, gestational carriers, offspring, current and future siblings, as well as the family, community, and health systems. Professionals must consider the patient(s) sitting in front of them as well as the impact of their work on all these additional affected parties and the various levels of ethical duty owed to each[1]. The MHP trained in the area of fertility counseling is the best option to help clients and practitioners consider the psychosocial issues and ethical dilemmas generated by the vast array of treatment possibilities. This work requires a multidisciplinary approach to treatment and counseling, which includes medical, psychosocial, legal, and ethical considerations, including the best interests of the patients, donors, carriers, and potential offspring.

The Integration of the MHP in ART

The MHP is in the forefront of the trend toward interdisciplinary teams in medicine integrating psychosocial issues into medical decision-making as well as patient-centered care[2,3]. The value of the MHP within the reproductive medicine field has long been recognized with MHPs participating in ethics committees and helping with controversial decisions[4].

ASRM and ESHRE[5,6,7,8] have issued several ethics statements and practice guidelines addressing current ethical issues in ART. Many of these statements explicitly recommend that patients meet with an MHP trained in infertility counseling and that clinics consult with an MHP as part of their multidisciplinary team to discuss the many complicated ethical and psychosocial issues related to their reproductive care.

Globally, the status of infertility counseling with regard to mandating counseling and defining the MHP role is uneven. For example, some jurisdictions in Australia, New Zealand, and the UK have professional guidelines that both mandate and prescribe infertility counseling, while in other areas, professional guidelines are produced by infertility counseling organizations but have less influence[9]. Although MHPs are an integral part of clinics and fertility, and endorsed by governing bodies such as the ASRM and ESHRE, international support for psychosocial counseling is still needed to emphasize its importance in conjunction with ART.

Guiding Principles of Practice

Ethics codes of medical and MHPs provide an ethical framework, but do not provide precise guidance concerning practice within an interdisciplinary team or particular reproductive clinical situations. The ASRM and ESHRE ethics statements, as well as general principles of bioethics, must also guide the professionals’ decision-making. In addition, human rights and social justice concepts increasingly play a role in ethical decision-making.

One of the most fundamental ethical debates in reproductive medicine is whether ART involves unnatural practices. The development of IVF has made it possible for one child to have as many as five different “parents” including an ovum donor, a sperm donor, a gestational carrier, and the two rearing parents. Furthermore, the technology exists for the intended parents to select the sex of the child and even specific genetic characteristics. Successful cryopreservation of sperm, embryos, and most recently oocytes, has enabled people to preserve their potential fertility almost indefinitely. These parental configurations raise profoundly difficult and often disturbing ethical questions and have forced the people working in the field of ART to confront whether specific technologies should be used for assisted reproduction simply because they exist.

Many experts in the field argue for procreative liberty, asserting that since the Constitution of the United States affords people the right to procreate on their own, it also gives individuals that right with assistance. Some argue that helping couples to become parents using reproductive technology supports autonomy, beneficence, and justice: three of the four ethical principles foundational to modern United States medical ethics[10]. Similar ethical arguments also support planned oocyte cryopreservation by women in an attempt to preserve future parenthood[11]. Autonomy, as well as the human rights concept of the right to a private family life, is supported when couples are given the power to make decisions regarding their treatment based on all the information pertaining to their own situation. Beneficence is furthered when couples are able to achieve their long-sought-after goal of parenthood. Justice exists if all who are in need can utilize the technology; although for some, the rising cost of treatment and the lack of insurance coverage in many states may impede justice and can be viewed as a social justice issue. At times, autonomy may also collide with nonmaleficence, the fourth ethical principle, especially when a patient requests a particular treatment that his/her provider believes may do harm to the patient or potential child. In these cases, one principle must be compromised for the sake of the other. Furthermore, what is ethical may vary depending on the social, spiritual, and religious community from which one arises and in which one chooses to raise a family[12]. In helping the parties navigate the profound ethical questions involved in ART, professionals must consider the impact on intended parents, offspring, involved donor(s) or gestational carrier, and any relevant cultural communities, as well as the impact of the specific ART on the larger society.

Defining the Role of Professionals in ART

Defining and shaping the role of professionals in ART has been the subject of ethical debate from the beginning. There is inherent tension between those who view their role as gatekeepers and those who define their role as counselors and educators providing support and psychoeducation. Considerable literature has addressed the ethical dilemmas faced by MHPs themselves in their complex roles[13].

Procreative libertarians believe in patient autonomy. Proponents feel that people have the right to procreate and parent, and therefore the role of professionals is to provide support, education, preparation, and treatment, but not to determine which patients are psychologically eligible for treatment or fit to parent[14]. Procreative libertarians differ from those who view the role as gatekeeper. Gatekeepers believe that the medical and psychological teams have the responsibility to consider the risks and prohibit treatment in situations that could potentially cause harm to the patient, recipient, donor, carrier, or unborn child. Gatekeepers believe to fail to act on the best interests of the patients and children would be in violation of the ethical principle of beneficence. Some experts also argue that social justice and human rights principles require consideration of potential exploitation of donors and gestational carriers, in addition to intended parents and offspring[15].

Regardless of the role the ART professional chooses or is asked to perform, all staff must clearly define their role to patients and clinics to minimize misunderstanding. Professionals must make it clear whether they are functioning in the role of the psychoeducational consultant or evaluator/gatekeeper and clarify any misconceptions about their role. Patients should understand exactly what information, if any, will be kept confidential and what information will be shared with the treatment team, partner, or other family members. If the professional chooses to act as gatekeeper, he/she must clearly disclose the evaluation process to patients in advance of any discussions so that patients can choose if and how to proceed. The varying roles of the ART professional will inevitably continue to be a major discussion point within the field[14].

Withholding Treatment

While historically physicians have an obligation to honor refusals of treatment, they do not have an obligation to honor all requests for treatment. Physicians may deny treatment based on the potential risks to the patient, donor, or carrier, and even risks to the prospective offspring.

Practitioners are often confronted with patients who do not appear capable of providing the necessary care for a child. Future offspring are entitled to a safe home and minimally competent childrearing. These interests must be weighed against the desires and rights of the intended parents to receive the treatment they need to reproduce and the provider’s own sense of moral responsibility in deciding which patients to treat. While most will agree about extreme situations involving physical or sexual abuse, psychological instability, or addiction presenting risks to the child’s well-being, it is more difficult to determine what good-enough parenting is without running the risk of being discriminatory[14].

The ASRM Ethics Statement and ESHRE Task Force on Ethics and Law set forth guidelines for childrearing ability and the provisions of fertility services[5,8], and indicate that fertility programs may withhold services from prospective patients on the basis of well-substantiated judgments that the intended parent(s) would be unable to provide adequate childcare and/or are likely to cause significant harm to a future child. The Ethics Statement is clear that programs should not discriminate against persons with disabilities nor violate that person’s constitutional rights. However, practitioners could potentially refuse to treat based on uncontrolled or untreated psychiatric problems, substance abuse, violent or criminal behavior, child or ongoing partner abuse, and previous loss of parental rights.

Assessing parental fitness presents numerous challenges because of the many interests that are involved and because there are no reliable methods to predict who will become a good parent. This decision should only be rendered after thorough multidisciplinary investigation. For example, medical staff are often quick to assume that a history or current episode of psychiatric problems automatically disqualify that patient from being a capable intended parent. The person’s history, compliance with treatment plan, and current level of functioning must be evaluated prior to a determination. The ethical practitioner bases decisions on scientific and professional knowledge, and has an adequate basis for professional opinions. Often, the decision does not require a refusal to treat the patient but rather the recommendation to seek the necessary help prior to a future reevaluation with collaboration and consultation with the patient’s outside treatment team. The Ethics Statement makes clear that, because it is so difficult to judge the potential risk to the unborn child(ren), fertility providers are not ethically obligated to refuse services in all cases in which there might be a question about such risk.

Third-Party Reproduction

The use of a third party to form families and the involvement of MHPs is now well established, and the number of children born each year to parents using egg or sperm donation and gestational carriers is growing. The donors, recipients, carriers, and offspring, as well as the programs that manage their care, all have distinct but at times competing interests, rights, and obligations. Psychological evaluation and counseling by a qualified MHP are strongly recommended for gamete and embryo donors and carriers, along with psychological consultation for recipients and their partners, if applicable. The assessment should include a psychosocial interview and, where appropriate, psychological testing. In cases of directed donation, the potential impact of the relationship between the donor and recipient should be explored, as well as potential psychological risks, evidence of coercion, and any plans that may exist relating to disclosure and future contact[16].

The Donors

Since technology has made it possible to separate the various components of motherhood, ovum donors and/or surrogates are subjected to medical and psychological risks not leading to their own parenting. Experts question whether donors, especially those who have not yet experienced parenthood, truly understand the long-term emotional implications of their donation. Many argue that those who are infertile have the right to choose a procedure with potential physical and psychological harm, but that it is morally unacceptable to subject a young, fertile woman to these same risks when she is not the intended parent[12]. According to the ASRM Ethics Committee[17] and ESHRE Task Force on Ethics and Law[7], programs have a duty to inform donors, as well as recipients of donor gametes, about potential legal, medical, and emotional issues involved in donation.

ART professionals should play an active part in helping donors contemplate whether they are certain that their reasons for undertaking donation are right for them now and in the future. They must give serious thought to how they feel about donating their genetic material to help create a child that they may or may not have future contact with. They must understand the differences between the genetic, gestational, and rearing aspects of motherhood. Those who have not started or completed their families must imagine how they would feel about having genetic children in the world should they become infertile themselves. Donors must understand the limitations of anonymity and consider their feelings regarding not knowing whether a child(ren) was created with their help and any likelihood of future contact.

Family Donation

Gamete donation has made it possible for participants to cross generational lines, raising many complicated ethical issues. The reasons for seeking a familial donor or surrogate are varied. Some prefer familial donation to preserve the family’s genetic heritage. For others, choosing a family member could reduce costs or speed up the process that can often involve months of waiting for a donor or surrogate. These arrangements may occur intragenerationally between siblings or cousins or intergenerationally when a parent donates to a child, a mother gestates her daughter’s embryo, or a child donates to a parent. The importance of the goal to preserve genetic linkages may be questioned when the reproductive arrangements become so extraordinary and complex.

While familial arrangements may offer advantages over the use of anonymous donors and surrogates, they also present unique counseling challenges. Intrafamilial collaborative reproduction raises ethical concerns distinct from other ART arrangements. The appearance of incest (i.e., sexual relations between two related individuals) or consanguinity (i.e., reproduction between individuals who are closely related genetically) are issues raised by the ASRM Ethics Committee. There are also obvious concerns about undue influence to participate, and possible confused parentage for resulting children[17,18,19]. For example, a brother may not provide sperm to fertilize a sister’s eggs or a sister provide eggs to be fertilized by a brother’s sperm. Similarly, a father should not provide the sperm to replace that of his daughter’s infertile husband. Nor should a mother provide eggs to replace those of her son’s infertile wife.

Cases without genetic connection that give the appearance of incest or consanguinity have the potential to cause emotional harm to the donor, surrogate, offspring, and extended family, but should not automatically be barred[19]. For example, a sister may donate eggs for her brother’s infertile wife to be inseminated by donor sperm or a brother may provide sperm to a sister who uses anonymous egg donation. Professionals recommend careful medical and psychological counseling to all of the parties involved so that coercion is avoided and the potential medical and psychological risks are thoroughly considered. ART practitioners must look for coercion where one party feels obligated to the other and sometimes need to help one party decline an uncomfortable request.

In child-to-parent donations, professionals must address the imbalance of power and the inherent boundary violations that may leave the family system or individual relationships vulnerable and at risk. The Ethics Committee notes that adult child-to-parent arrangements require caution to avoid coercion, and parent-to-adult child arrangements are acceptable in limited situations. Some experts argue that, because most children feel indebted to some degree, they are not truly free to say no to their parent’s request[20]. For example, how will it appear to the participants and a potential child when a mother remarries and wants to use her daughter as the donor? ART practitioners must consider the daughter’s relationship with the stepparent to make sure that there are no sexual overtones. The daughter may be financially or otherwise dependent on her mother and stepfather and may therefore feel obligated or coerced. In addition, the donor’s father will be the genetic grandfather of his ex-wife’s child with her new husband. Finally, she may have some conflicting feelings about being both biological mother and sister to this child. It is critical for all the parties involved to have a clear understanding of boundaries and to think through scenarios that may challenge these arrangements in the future. Some professionals feel supportive of a parent donating to a son or in some cases to a daughter, because the parent–child relationship includes the concept of a parent giving to their child.

The ASRM Ethics Committee[17] and ESHRE Task Force on Ethics and Law[18] suggests that the use of adult intrafamilial gamete donors and gestational surrogates is generally ethically acceptable in some situations and in some conditions when all participants are fully informed and counseled. ART practitioners must help all the parties explore their motivations, concerns, expectations, wants, hopes, and fears regarding the process. The psychosocial impact on the potential children and their right to privacy requires special attention as well. Programs that participate in intrafamilial arrangements should develop policies for such procedures and be prepared to spend additional time counseling not only the intended parents, the gamete donors, and the gestational surrogates, but also their partners and children to ensure that they have made free, informed decisions[16,19]. All parties should be in agreement regarding disclosure to the potential child and otherwise. Ultimately, the donor should feel comfortable allowing the recipients to make all decisions related to disclosure, the pregnancy, and the potential child’s upbringing. When the assessment reveals concerns about undue emotional or financial pressures on the prospective donor or surrogate, unhealthy family dynamics, or incest or consanguinity, the program is ethically justified in denying access to these procedures. They should also offer prospective donors and gestational surrogates the option of being excluded as participants without other family members learning of their reluctance to participate.

Information Sharing and Disclosure

Using a third-party donor or donor gametes involves a complicated interplay of psychosocial needs of the donor, recipient, carrier, and offspring, as well as program obligations. Programs should be aware of the complexities surrounding the often-competing interests with regard to information sharing in light of changing realities regarding anonymity [21].

Whether or not children conceived using donated gametes should be told about their genetic origins remains one of the most disputed ethical issues. The question of openness versus secrecy is a complicated one, involving profound ethical, legal, religious, and psychosocial issues. The historical trend of not encouraging disclosure to children or others has changed with the recognition of the hazards of secrecy[16] and the rights of children to know the identity of their genetic parents[22]. Support has grown for disclosing the fact of donation and allowing offspring access to nonidentifying donor information as evidenced by research showing an increase in the number of parents who intend to disclose[6].

There is an increasing opinion that it is not justifiable to keep such information secret based on arguments involving children’s inherent right to know about their genetic/gestational beginnings, the possible negative effect of secrecy on family relationships, and/or the accessibility of genetic information rendering secrets impossible[23]. For example, children are now asking parents for genetic testing as a holiday or birthday gift because their friends did it for fun. Donors, who at one point chose anonymity, later decide to do genetic testing or join a registry and reach out to offspring who share genetic links. A school science unit on genetics can lead to new questions from children conceived via donor eggs who are unaware of their origins. After comparing their eye color, blood type, and earlobe attachment to their parents’, children may question why their results do not match their parents as they had been taught, leaving the parents wondering how to respond.

In 1984, Sweden was the first country to make donors non-anonymous by law. Several countries have since removed donor anonymity: Austria, Finland, Iceland, the Netherlands, Switzerland, the UK, New Zealand, and the Australian states of New South Wales, Victoria, and Western Australia[15]. Indeed, some argue that donor anonymity is anachronistic and contact with the donor should now be considered normative. For that reason, increased focus in counseling on preparing the intended parents for possible future contact with the donor is considered important when discussing family-building[24].

A child’s request for available information concerning his or her non-anonymous donor requires that the parents have informed the child of their use of a donor. The ASRM Ethics Committee[22,6], other advisory groups, and researchers have encouraged recipient parent(s) to disclose the fact of gamete donation to offspring, and a number of clinics provide for some form of future contact between donor and offspring if the participants agree. Proponents of disclosure argue that nondisclosure violates the child’s fundamental right to know about his/her origins and could potentially undermine the donor-conceived person’s identity development[25]. The human rights argument centers on the right to identity included in the United Nations Convention on the Rights of the Child[26]. Arguably, open communication, as opposed to secrets within families, promotes healthy family functioning[27,28]. Research on families who have disclosed indicates that few have regrets and disclosure does not appear to injure the child. Some research suggests a positive effect on parent–child relationships in disclosing families[29]. Other proponents of disclosure emphasize the medical interests of the donor-conceived child. Future medical emergencies could lead to possible discovery of the absence of a genetic match to their mothers or fathers[6]. Disclosure can protect the offspring’s interest in knowing their genetic heritage, in securing accurate information about potential health problems, and in making future medical decisions[30]. However, some studies of children who have not been informed show they are doing well developmentally and psychologically, and have not been harmed by nondisclosure[31,32]. There are as yet no long-term studies to support this theory and there are numerous anecdotal reports of children and adults inadvertently finding out, leading to significant psychological issues.

Ethical concerns continue to arise as potential methods of future contact between the parties become more accessible. Contact, both deliberate and unexpected, between donors and offspring is being facilitated and promoted through websites offering assistance to offspring in tracing their origins and connecting with others who share their genetics. Direct-to-consumer (DTC) genetic testing also enables individuals to discover information about their genetic ancestry. The increasing availability of DTC genetic testing will result in individuals unaware of their donor conception inadvertently discovering their origins and identifying their anonymous donors and others sharing their genetics[23,33]. All the parties must understand that the connection does not necessarily end with the donation or birth of a child. Given the variation in programs with regard to archiving and sharing information as well as advances in DNA tracing, donors should also fully understand that offspring or intended parents might contact them in the future even if they chose “anonymous” donation. Couples should be encouraged to think through unplanned disclosure and the child’s access to information through the growing availability of the Internet, genetic testing, and DNA databases[34].

Experts agree that the more the recipient couple feels comfortable and prepared for this parenting option, the more likely it is that they will be fulfilled as parents and make decisions that are in the child’s best interest. Counseling and informed consent about disclosure and information sharing are essential for donors and the intended parents[30]. Intended parents planning to disclose should pick an ART facility that matches their expectations regarding the amount of information gathered, updated over time, and disclosed to recipients. The Ethics Committee encourages ART programs; sperm, oocyte, and embryo banks; and donation programs to develop flexible policies to accommodate varying information-sharing preferences, and encourages the promotion of the offspring’s interests, while respecting the privacy and autonomy interests of donors and recipient parents. Programs should clearly inform donors, intended parents, and carriers before their participation about the information that will be shared as part of the screening process as well as in the future. Programs are also obligated to inform all parties that policies cannot be guaranteed if laws or individual circumstances change and the possibility exists of future contact from offspring. Legal aspects of sperm and ovum donation, including anonymity, could be challenged in the future, thereby changing the public climate of openness versus secrecy. Other countries already have, or have sought to establish, open donor registries to protect the rights of the potential child. The ASRM recommends[6] that programs should include discussion encouraging donors and recipients to authorize the disclosure of nonidentifying medical information and that donors should be encouraged to allow nonidentifying and/or personal contact in the future if the offspring and donor agree. It also supports the gathering and storage of medical and genetic history information that can be provided to offspring if they request[30].

There are arguments both for and against disclosure and each couple should be allowed to decide with the help of trained ART professionals which choice is best for them and their child(ren) within the context of these issues.