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Dr. Goodheart is a licensed psychologist who specializes in family therapy. Although Dr. Goodheart is not a member of the Mental Health Professional Group (MHPG) of the American Society for Reproductive Medicine (ASRM), she has promoted herself as an expert in infertility as she had personal experience with IVF, that is, she attempted IVF with her and her husband’s gametes when she was in her early 40s, had a mid-trimester pregnancy loss, no subsequent pregnancies, and has since adopted two children.
Amanda, 37 years old, and her husband, Chuck, age 40, are currently in the first trimester of their first pregnancy, conceived through IVF. She and Chuck have seven frozen embryos remaining from this cycle. They wish to retain five and donate two of their embryos to their friends, Rebecca and Rick. Amanda and Rebeca work together and all live in the same city.
Rebecca, age 42, and Rick, age 50, have been married for five years with no children. They have attempted two cycles of intrauterine inseminations and two IVF cycles. Previously, Rebecca and Rick have used her oocytes and his sperm, but to no avail having both female and male factor diagnoses. They are both eager to receive two of the excess embryos and wish to use them for their next cycle, scheduled in one month. Amanda’s reproductive endocrinologist (RE) has also been treating Rebecca, thus far unsuccessfully. Their RE, a solo practitioner, located in a mid-size cosmopolitan city not far from where the four patients reside, has requested Rebecca and Rick consult with a mental health professional (MHP) for their required recipient psychoeducational interviews. No request was made that Amanda and Chuck be seen for a psychoeducational session.
Dr. Goodheart, with whom Rebecca and Rick are scheduled to meet, called upon us in advance of their visit for consultation and described this very complicated case. Dr. Goodheart is a member of the two couples’ church community and the only MHP available with any experience in the area of fertility counseling in the small city (population 100 000) in which they all reside. Dr. Goodheart does not personally know the RE. Rebecca and Rick selected her in consultation with Amanda and Chuck because they have all previously served together on several church committees.
The above vignette illustrates one of many possible ethical minefields encountered by fertility counselors. Revolutionary breakthroughs in scientific research have indisputably impacted and transformed reproductive technology over the past four decades. Although strides in biomedical technology have introduced significant treatment alternatives, they also have sparked controversy, public debate, political extremism and extensive ethical challenges. We begin by presenting information necessary for the resolution of a vast array of complex and ethically challenging situations, and will return to Amanda and Rebecca later. This chapter will discuss: principles and standards for ethical clinical practices; benefits and limitations of formal ethics committees; and a practical format that fertility counselors can implement to assist in ethical decision-making.
Ethical principles
It seems upon first blush that ethics are hardwired in humans, as most people know the difference between right and wrong. Moreover, we learn some variation of the Golden Rule before age 5. Across many cultures, children approaching their neighborhood sandbox are admonished to play nicely (beneficence), not to hit other children (nonmaleficence), share their toys (access and justice) and to take turns on the swings (fairness). However, as there are many perspectives to consider, consensus on the resolution of ethical dilemmas is elusive.
Ethical practice in fertility counseling requires MHPs to commit to the ethical code and standard of care of their individual professional societies, adhere to pertinent laws, policies and legislation in their jurisdictions, and utilize ethical principles most relevant to bioethics. Ethical principles help fertility counselors identify and analyze decisions regarding novel or complex dilemmas in reproductive medicine. Yet, despite referring to counseling in the ethics and practice guidelines of reproductive medical organizations worldwide, none delineate ethical principles specifically regarding fertility counseling, clearly leaving a void for MHPs bridging these fields.
However, there does appear to be a core of ethical standards approaching universal acceptance across various MHP affiliations worldwide. These include respect for individuals and cultures, competence to practice, informed consent, privacy, confidentiality, avoidance of conflict of interest and dual relationships and a focus on client well-being, all of which are consistent with ethical principles of beneficence and nonmaleficence [1–5].
The following five bioethical principles can aid fertility counselors to achieve balance in their resolution of ethical dilemmas [6–7]:
Autonomy: treating people with respect for their dignity, rights and capacity for self-determination as guided by their stated wishes, preferences and values. Client choices must be voluntary, free of coercion or controlling constraints by others, and informed, having been given full disclosure of all information available regarding treatment options. Within the area of assisted reproduction, multiple parties can be involved with the result that the autonomous needs or choices of the various participants can conflict. Autonomy, however, is neither absolute nor as highly valued universally as it is in Western cultures [8].
Beneficence: the obligation to contribute to the welfare of an individual. MHPs have a responsibility to do good, be proactive and prevent or minimize harm when possible, including harms to the potential children being created through the assisted reproductive technology (ARTs).
Nonmaleficence: MHPs are obligated not to intentionally or negligently cause harm. If nothing can be done to benefit a patient, at least do nothing that will harm him or her.
Justice: reflects fairness, such that all patients will be treated in a fair and impartial manner and goods and services will be distributed or accessed equitably.
Fidelity: involves integrity, loyalty, truthfulness and honoring one’s commitments to the client enabling trust of the MHP and faith in their relationship. MHPs are expected to maintain confidentiality, advocate for and not abandon or threaten clients, nor leave obligations unfulfilled.
It is unreasonable to expect ethical principles to provide explicit guidance for resolving conflicts and balancing competing claims in every instance in which professional duties clash and create ethical dilemmas. Formats for ethical decision-making and consultation with an ethics committee and/or one’s peers can be invaluable in providing assistance and a rationale for one’s decisions.
Ethics committees
Healthcare ethics committees have evolved to become the primary formal mechanism for addressing ethical issues in clinical settings in pluralistic societies. Because of the multitude of complex, value-laden ethical issues raised within contemporary reproductive medicine, it has been suggested that fertility practices could benefit from having an in-clinic mechanism for ethical decision-making [9]. The advantages of in-house ethics committees are: they provide transparency throughout the decision-making process; committee members have the requisite expertise specific to reproductive medicine enabling them to consider the moral ramifications of the various ART treatments and are conveniently available for consultation when disagreement arises among staff members regarding the acceptance or rejection of patients who present for treatment; and members can educate their clinics’ colleagues and staff members, as well as being able to provide detailed information which ultimately can generate clinical and practice policies and guidelines. These committees are able to prevent treatment that may be harmful to stakeholders, for example, potential offspring.
However, there are several notable limitations to in-house ethics committees: the assistance of in-clinic ethics committees may be too infrequently called upon to justify their cost; the scope and breadth of in-clinic committees may be too narrow in comparison to that of hospitals’ general ethics committees [9]; and committee members may be defensive of their clinic’s policies because of the members’ dependence on the clinic for their employment.
Regardless of whether a fertility practice or fertility counselor has access to an in-clinic or hospital-based ethics committee or individual ethics consultants, it is useful to involve a variety of people who do not necessarily share the same values, yet incorporate multiple perspectives and insight, into the ethical discussion. The views of the patients (and their families, if appropriate) must also be included to prevent a return to a culture of paternalism.
Standards for the ethical practice of fertility counseling
MHPs have an important role in society as trusted experts with a duty to maintain the highest standards. Most national associations of MHPs (e.g., psychologists, social workers, marriage and family counselors, etc.) have explicit ethical standards to which their members abide. Yet, MHPs are not expected to blindly adhere to standards, but rather actively process and reason.
Furthermore, fertility counseling has become global in focus with MHPs working cross-nationally and clients crossing geographic borders to receive treatment. Ethics call upon fertility counselors to respect diversity and thus be aware of cultural, religious and ethnic differences in the meaning of family, kinship bonds, childlessness and the acceptability of fertility treatment in multicultural settings.
Ethical standards, unlike ethical principles, are enforceable. The following standards are found in the ethical guidelines of MHPs and reproductive medicine organizations throughout the English-speaking world. Their incorporation is essential for the ethical practice of fertility counseling.
Competence
The need for MHPs to offer counseling to fertility patients, rather than fertility nurses and physicians, has been recognized since the mid 1980s. Specialized knowledge of the psychosocial implications of infertility, complex medical treatments, alternative family building options, pregnancy and parenting issues, as well as legal and ethical issues that arise is necessary for those who counsel the infertile. Few MHPs have been adequately prepared by their graduate training to work with reproductive medical patients, particularly those considering undergoing third party reproduction. It is apparent that one needs more than personal experience with infertility and a graduate degree in a relevant mental health field to competently and ethically offer fertility counseling. However, at present, no uniform set of qualifications exists regarding education and/or experience that is either required or recommended.
The USA, Canada and Europe recommend, in addition to a graduate degree and license, certification, or registration to practice in a mental health field, that counselors should obtain training and/or supervision in the medical and psychological aspects of infertility [10–12]. The USA and Canada recommend continuing education in the medical and psychological issues in reproductive healthcare [10,12], and Canada recommends membership in a relevant professional body with a code of ethics [10]. However, these guidelines have no legal mandate to enforce them.
Confidentiality
There is worldwide agreement in the ethical codes of MHPs that confidentiality is a right of all those to whom services are provided and is essential to create trust in the relationship. It should be shared with clients that confidentiality is not absolute, due to legal and regulatory requirements placed upon the MHP, and written consent should be obtained for disclosures. Furthermore, confidentiality must also be upheld when MHPs seek consultation from colleagues or use clinical information for teaching purposes, as well as in the storage and disposal of clinical records.
Informed consent
Informed consent has three essential components. The patient should be fully informed, give his or her consent voluntarily, and have the requisite knowledge and capacity to make decisions. The concept of informed consent within the field of reproductive medicine involves very private, personal and often pivotal decisions about childbearing and is afforded great prominence. Fertility counselors must contribute to ensuring their clients receiving reproductive services are accurately informed.
One of the primary purposes of informed consent is to protect patient autonomy by encouraging ongoing and open communication of relevant, accurate and unbiased information, enabling patients to exercise personal choice. Fertility counselors may wear many different hats (e.g., therapist, counselor, evaluator, psychoeducational consultant) with varied stakeholders. It is important to inform clients prior to initiating an interaction of the specific role of the fertility counselor, the purpose of the interaction, to whom information will be disclosed and who will receive a copy of any notes or reports generated so as to allow the patient to make a clear decision to participate or decline participation.
Gamete donors, gestational carriers (GCs) and intended parents (IPs) must be given adequate information so they can give informed consent to treatment. Since gamete donors and GCs are assuming health risks for the benefit of others, a high level of informed consent regarding medical procedures and future psychosocial implications is required. Oocyte donors need to receive information that would include the medical risks of undergoing ovarian stimulation and oocyte retrieval, as well as the long-term risks of these procedures. Additionally, along with being informed of their right to withdraw at any time up to the moment of treatment, gamete donors should be given sufficient time to consider their decisions before treatment commences. All donors of oocytes, sperm and embryos, and GCs, should be informed of the psychosocial implications of undergoing their specific ART protocol and their lack of dispositional authority. Moreover, fertility counselors should discuss with anonymous donors that offspring conceived with their gametes may be able to contact their donor in the future using DNA testing, internet search capabilities and new technological developments.
Dual roles and/or conflicting relationships
The MHP has the obligation to follow ethical principles and consider the best interest of the patient receiving services and the client, if these differ, regardless of their role, for example conducting an evaluation, counseling, or psychoeducational consultation. Fertility counselors are often asked to perform multiple roles with multiple clients in the treatment(s) intended to create a child, thus the potential for dual roles exists. If asked to provide psychological services at the request of a third party (e.g., IP, referring RE, agency), prior to offering services fertility counselors should explain to all parties concerned: the nature of the relationship with each; the fertility counselor’s role; the probable uses of information obtained; the limits of confidentiality; and when relevant, the financial arrangements regarding the provision of service.
Although international guidelines counsel against dual roles, in reality, particularly in less densely populated regions with fewer MHPs versed in fertility counseling, this may occur more often than is desired. Furthermore, clients may not be able to view a fertility counselor embedded within a reproductive medical practice as anything other than an evaluator. It is also questionable whether a MHP, who initially functioned as a counselor with fertility patients, later could be an objective evaluator.
Dual relationships can exploit the power differential inherent in the counseling relationship and harm the client. The more typical conflicts of interest in the practice of fertility counseling may occur between the MHP and the clinic or agency for whom they work or from whom they receive referrals. If a treatment team to whom the fertility counselor has reported ignores or disregards his or her recommendation, the fertility counselor may be confronted with the decisions of how vigorously to protest, whether to continue to work with this treatment team, as well as determining any additional responsibilities the fertility counselor may have to the client. Dual relationships may be unavoidable and, while not prohibited, fertility counselors are responsible for diligently keeping such multiple relationships harm-free.
Duty to care and not abandon patients
There are multiple situations in which a fertility counselor refuses to continue treatment with a client. However, to fulfill their professional duties, the MHP has responsibilities to the client to avoid abandonment or wrongful termination. If an assessment reveals an issue for which a donor or GC should seek further treatment, the fertility counselor has an ethical obligation to provide feedback and referrals so patients can secure care. Infertility patients have the right to access a copy of their test results, unless the fertility counselor believes releasing summaries of their test may cause substantial harm to the client or may be misused or misinterpreted.
Record keeping
Good records are the MHP’s primary proof of having offered quality care and, with consent, can be useful to subsequent treating professionals. One must follow the laws and regulations of one’s jurisdiction as well as professional guidelines regarding content and retention of the mental health record.
Generally, it is legally mandated that records be maintained a set number of years after the last date of service. However, in some circumstances, for example when donor gametes have been used to create a conception, it may be wise to retain records of both donors and recipients longer than is legislated, weighing the risks associated with obsolete or outdated information with the potential benefit associated with preserving the record.
Format for ethical decision-making
Ethical decision-making in fertility counseling, which often touches on an individual’s deepest beliefs about the meaning of creating and sustaining life, requires thorough familiarity with the ethics codes and standards of one’s profession, ethical guidelines published by organizations responsible for those who practice in the field of reproductive medicine, and the laws, policies and regulations of one’s jurisdiction. Inevitably situations will arise where ethical principles are ambiguous or conflict with one another, relevant laws or regulations, clinic or agency policies, or ethical standards in allied professions. The judgment and discretion of the MHP must always fill the gap between abstract ethical principles, enforceable ethical standards and the reality of clinical practice [13].
The adoption of a structured strategy for ethical decision-making is imperative in providing a method for resolving ethical dilemmas. If the MHP follows such a strategy, considers the best interest of the client as well as other stakeholders in the situation, and documents the process, he or she can provide a professionally sound explanation for the chosen course of action should those decisions and actions be challenged [14]. Discussion with colleagues, that is professional peer advisory groups and supervision, about the difficult ethical choices we confront can add the insight and perspective of others.
We now return to the vignette about Amanda and Rebecca posed at the beginning of the chapter, and will use the following adaptation of Horowitz, Galst and Elster’s structured framework for problem-solving (see Table 20.1) to guide our decision-making process for resolving the ethical dilemmas [15]. We will examine the different steps and discuss important issues for Dr. Goodheart’s consideration. We will comment as consultants to this psychologist, who will be acting as the fertility counselor responsible for interviewing both couples prior to the commencement of Rebecca and Rick’s potential embryo transfer. Additionally, where appropriate, we will proffer our personal opinions.
1. Identify the ethical dilemma(s). 2. Review current literature. 3. Determine the relevant ethical principles and practice standards involved. 4. Review existing laws, policies and procedures. 5. Address practical considerations. 6. Balance multiple perspectives of all stakeholders. 7. Generate alternative courses of action. 8. Consider the anticipated consequences of each alternative. 9. Select and implement a course of action. 10. Evaluate the outcome. Implement changes, as needed. |
Step 1: Identify the ethical dilemma(s)
What are the issues?
Maleficence
We would inform Dr. Goodheart of potential problems that may arise which could harm the participants. Amanda, the potential donor still in an early stage of pregnancy, has not completed building her family. Should Amanda miscarry or give birth to a child with physical or mental limitations, she may regret donating any of her remaining embryos, wishing to have them all for future IVF cycles. Conversely, Amanda may worry the embryos donated to Rebecca would develop into a child with disabilities. It is unknown whether the patients currently could address these issues other than on a hypothetical level. Dr. Goodheart should inform Rebecca about increased risk for fetal chromosomal abnormalities associated with Amanda’s age, which is older than most accepted oocyte donors.
Hopefully, our consultation with Dr. Goodheart would alert her to any blind spots she may have as a result of her own infertility and subsequent failed treatments. Fertility counselors’ personal reproductive histories and fertility experiences may influence their reactions to clients. If she were so inclined, prior to self-disclosure, we would advise Dr. Goodheart to consider her reasons for the disclosure and whether it would be beneficial to the clients. Whether a self-disclosure is ethical depends on many factors, including the therapist’s rationale for the disclosure, the personality traits and psychological issues of the client to whom the disclosure is made, and the specific circumstances surrounding the disclosure. We would emphasize the importance of the MHP’s careful documentation of her disclosure in her therapeutic records.
Conflict of interest
Neither of us prefers those situations where both the donor(s) and recipient(s) are being treated by the same RE. Larger practices employing two or more physicians are best able to accommodate designated sperm, oocyte and embryo donors and their recipients. However, for patients residing in less densely populated areas, it is not uncommon for both to use the same RE. One might also question if a conflict of interest exists when both donors and recipients meet with the same MHP. However, it is deemed preferable the two couples meet with the same MHP rather than not have an opportunity to obtain psychoeducational input from any MHP at all.
We would inform Dr. Goodheart that, where possible, it is preferable for each couple to be seen by different physicians so each doctor can advocate for his or her own patients. Considering Amanda and Chuck’s best interest, their RE, following the ASRM practice guidelines [16], might be inclined to recommend they wait until they have completed building their family prior to embryo donation. Acting in Rebecca and Rick’s best interest, their RE might recommend not using Amanda and Chuck’s embryos, preferring they choose embryos from younger donors. Additionally, Rick and Rebecca’s physician might want them to quickly proceed, because pregnancy complications often arise when the intended mother is of an advanced age.
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