Counseling known participants in third party reproduction

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Chapter 10 Counseling known participants in third party reproduction


Erica J. MindesandLaura S. Covington



Maria, age 40, is diagnosed with Stage 4 chronic kidney disease (CKD). She and her husband Aaron, age 41, have wanted to start a family since they were married two years ago, but her nephrologist “put the brakes” on her carrying a pregnancy. Her sister, Rita, age 35, who has watched for the past 10 years as Maria has dealt with health problems, came forth and volunteered to be a gestational carrier (GC) for Maria and Aaron. Not wanting to delay their plans to create a family any longer, Maria and Aaron immediately sought treatment at a fertility clinic. Following the initial consult and blood work, the reproductive endocrinologist (RE) informed them there was only a 20% chance for pregnancy using her sister as a GC and Maria’s eggs, and recommended they consider using an egg donor. Aaron and Maria were distressed by this news. Besides now having to grieve the loss of having a child who is genetically related to both of them, they had multiple concerns about using an anonymous egg donor including: the limited availability of Hispanic donors at the practice (Maria is Hispanic and it was important to both Aaron and her that the egg donor also be of Hispanic origin); an increased waiting time to begin treatment due to the restricted donor pool; and given Maria’s own evolving health issues over the past 10 years, they were worried about the accuracy of the donor’s family medical history. Maria and Aaron decided to take a few months off from treatment to process their feelings of loss and consider next steps. Maria’s extended family is aware of her diagnosis of CKD and the havoc it has wreaked on her health, as well as the plans she and Aaron have to create a family. Word soon spread to family members about the couple’s most recent setback and their need to use an egg donor. During their break from treatment, Maria and Aaron began to talk about their wish that Maria’s younger cousin would offer to be their egg donor.


To be continued…



Introduction


Psychosocial issues are inherent for individuals involved in any form of third party reproduction, be it gamete donation or gestational surrogacy. However, when participants have a relationship that existed prior to becoming partners in the collaborative reproduction process, the potential psychosocial issues become more complex. The role of the fertility counselor is to provide education, counseling and assessment regarding the potential psychosocial risks and benefits for each of the parties involved in treatment, as well as for the relationship that already exists between them, the broader family and/or social network and any children, whether they are born from the treatment process or are children of the gamete donor or GC.


This chapter presents practical information to aid the fertility counselor in preparing for and conducting the psychosocial counseling and assessment of known participants in third party reproduction. Topics covered in the chapter will include: (1) reasons fertility patients may wish to use a known gamete donor or GC; (2) a brief overview of professional guidelines for the counseling and assessment of known participants in third party reproduction; (3) the counseling and evaluation process for known gamete donation and gestational surrogacy; and (4) other situations that may arise in known collaborative arrangements. Case vignettes are integrated throughout the chapter and provide examples of issues that may develop during the counseling and evaluation process.



Definition of terms


For the purpose of this chapter, we define a known gamete donor or GC (where the pregnancy is established via in vitro fertilization [IVF] and embryos are created using oocytes from the intended mother or an egg donor) as a family member, friend or acquaintance, that is, an individual with whom the recipients or intended parents (IPs) have some type of preexisting relationship. To further clarify, while it is standard practice for IPs and GCs to meet prior to the initiation of treatment, this chapter only addresses GC arrangements where the previous relationship between parties was independent of the IPs’ fertility treatment. The known gamete donor or GC may have either volunteered or been asked by the fertility patient(s) to collaborate in the third party reproduction arrangement. Please also note that for the sake of consistency throughout this chapter, the term “recipients” is used to indicate individuals or couples who receive donated gametes, and the term “intended parents” refers to individuals or couples using a GC to create their family.



Reasons for choosing a known collaborator


There are multiple reasons why an individual or couple pursuing treatment with third party reproduction may choose to use a known donor or GC. In the case of intrafamilial gamete donation, there is the assurance that some type of genetic connection will be maintained between the infertile individual and a child born from the process [1,2]. In addition, a significant physical resemblance between the donor and recipient may be a motivation [3]. In a same-sex couple, intrafamilial gamete donation can also allow for a genetic link to both members of the couple. For some individuals, the comfort with a family connection includes broader kinship ties, such as the use of a brother-in-law as a sperm donor, or a sister-in-law as the oocyte donor or GC [4]. Utilizing a general definition of a known gamete donor or GC that incorporates friends and acquaintances, as well as family members, the preference for a known arrangement may also include the more immediate availability of the third party participant and thus a shorter waiting period to treatment. Known gamete donors and GCs are often perceived by recipients and IPs to provide greater and more reliable medical, educational and social history, and to be more accessible throughout the treatment process [36]. In countries and jurisdictions where commercial gamete donation and gestational surrogacy is permitted, the use of a known gamete donor or GC can also decrease the costs or treatment, and for some people it is the only financially viable option to create a family. Finally, a potential advantage is that the donor or GC has the opportunity to be known to the child, develop some form of a relationship with the child, and be available, in the case of gamete donation, to provide updated health information about themselves and their families [1,5].



Professional guidelines


It is the responsibility of the fertility counselor to become familiar with and follow any guidelines created by the professional societies (e.g., American Society for Reproductive Medicine [ASRM], European Society for Human Reproduction and Embryology [ESHRE]) or government regulatory agencies that establish standards of care in the countries or regions where they work. This section is not meant to be a thorough review of all ethics, practice and counseling guidelines that address known arrangements in third party reproduction. Rather, we have attempted to highlight some areas of consensus in selected professional society and government agency guidelines.



Acceptable intrafamilial collaborations


The ESHRE Task Force on Ethics and Law [1] and The Ethics Committee of the ASRM [2] have each published reports that address the use of family members as gamete donors and surrogates. Both reports recommend against arrangements that replicate first- and second-degree consanguineous relationships. The ASRM and ESHRE documents also address collaborative reproductive arrangements that give the impression of incest or consanguinity. This may include, for example, a sister serving as a GC for her brother and his spouse, or a brother donating sperm to his sister, who will be creating embryos with an ovum donor. Neither situation is necessarily unacceptable, as genetically related individuals do not provide the gametes. However, the appearance of incest may have psychosocial implications for the participants, other family members and any children born from the process and both reports suggest this is explored carefully in counseling. Some guidelines are more restrictive than those put forth by ASRM and ESHRE with regard to the known arrangements considered permissible. For example, New Zealand’s Advisory Committee on Assisted Reproductive Technology (ACART) published the “Guidelines on Donation of Eggs or Sperm between Certain Family Members” [7] in 2007. These guidelines establish that all intrafamilial donations other than sister-to-sister, brother-to-brother, or cousin-to-cousin will need to be reviewed by the Ethics Committee on Assisted Reproductive Technology.



Possibility of undue pressure or coercion


Numerous ethics, practice and counseling guidelines address the need to assess for evidence of coercion or undue influence among known participants in collaborative arrangements [1,2,711]. Intergenerational familial arrangements may be particularly subject to undue pressure between the parties [1,2] and the ASRM recommends that some of these arrangements should be discouraged (e.g., daughter to mother ovum donation, in which mother is remarried and thus, the embryos were not created from gametes belonging to two genetically related persons) [2]. The Assisted Human Reproduction Counselling Practice Guidelines of the Canadian Fertility and Andrology Society’s Counseling Special Interest Group (CSIG) defines coercion as “influencing the actions of another, either implicitly or explicitly, by taking advantage of a weakness (exploitation), or unduly exerting power or influence” [10, p. 31]. To discern proof of coercion, the CSIG guidelines suggest fertility counselors question collaborative participants regarding: motivation for participation in the known arrangement; financial compensation; influence of others in making the decision to proceed with treatment; and anticipation of any negative consequences that could result from pulling out of the arrangement. The ASRM Ethics Committee report specifically states that prospective known gamete donors and GCs should be provided with the option to be excluded, without the IPs or recipients being informed of their hesitancy to participate [2].



Counseling and evaluation


Most professional guidelines that address known collaborative arrangements recommend independent counseling for recipients/IPs and gamete donors/GCs, including the spouse/partner of the gamete donor or GC [1,2,711]. A number of guidelines also suggest a group or joint counseling session that includes all of the participants [1,711]. The ESHRE document [1] responds to the question of whether separate counselors should be available to work with each party and concludes that counselors with an expertise in this fertility counseling ought to be able to provide appropriate services to all parties involved in the collaborative arrangement. Psychological testing of gamete donors and GCs is recommended by the ASRM [8,12] and is considered a standard of care in the United States [1315].



Unique aspects of psychosocial counseling and evaluation for known participants


Issues to address in clinical interviews with all donors, recipients, GCs and IPs, whether known or anonymous, are addressed in Chapters 7, 8 and 9 of this book. As indicated above, best practices for the psychosocial counseling and evaluation process among known participants involves three components: (1) a counseling session with the recipients or IPs; (2) a clinical interview with the known gamete donor or GC and their spouse/partner, and psychological testing, if applicable; and (3) a group interview in which all of the parties meet together. This chapter will focus on the unique issues that need to be explored and assessed in the psychosocial counseling and evaluation process with known participants including:




  • any evidence of coercion (assessed by asking about motivation for participation in the arrangement; financial compensation; influence of others in making the decision to proceed with treatment; and anticipation of any negative consequences that could result from cessation of participation);



  • current status and history of the relationship and relationship dynamics between all parties, as well as the broader family or social network;



  • potential effects of the arrangement on the relationship between all parties;



  • implications of and responses to the collaboration in the context of the broader family or social network;



  • expectations each party has regarding treatment (e.g., number of treatment cycles, disposition of embryos for known gamete donation, number of embryos transferred for known GC arrangement, etc.);



  • how participants anticipate they will cope with an unsuccessful treatment outcome (e.g., unsuccessful treatment cycle, pregnancy loss, etc.);



  • expectations and boundaries pertaining to the future role of the known gamete donor or GC in the life of a child born from the process;



  • whether, when and how a child born from this process will be informed of the means of their conception and the identity of the known donor or GC;



  • any potential effects on the current or future children of the known gamete donor or GC; and



  • plans the recipients or IPs may have to “thank” the donor or GC (e.g., writing a note, some form of a gift, or some type of symbolic thank you ritual), as a means to create a sense of closure for all parties when the process is completed.


Throughout the psychosocial counseling and evaluation process, the fertility counselor should help the known collaborators understand the need for consensus between all parties on treatment and life-long issues, and the potential negative effects that disagreement could have on the relationship between the participants, as well as the broader dynamic of the extended family or social network.



Patient preparation



The case of Maria and Aaron continues…


After taking a three-month break from treatment that included many conversations regarding the best way to proceed, Maria and Aaron decided they would ask Maria’s cousin, Sofia, if she would consider being their egg donor. When Sofia said she would be “honored to help” them, Maria and Aaron let their RE know they were ready to move forward. The RE explained that the first step was for them to contact the fertility counselor who works with the practice. Maria called the fertility counselor, who described the psychosocial counseling and evaluation process for participants in known gestational surrogacy and egg donation arrangements. Maria expressed her confusion and frustration to the fertility counselor, “These are my family members. We are very close and already know everything about one another. Why must we go through this process? It only slows things down even more.”


Known collaborations may result from the gamete donor or GC either volunteering or being asked for their participation. It can be easier and less anxiety provoking for recipients and IPs when the family member or friend comes forward with an offer to help. The prospect of having to ask for such an important gift, and the potential for rejection, may be experienced by patients as an additional insult to the existing psychological injury of infertility. A fertility counselor can provide support and help educate patients on how to ask a potential gamete donor or GC to collaborate. For example, writing the proposed donor or GC a letter or email allows them and their spouse/partner to process the request without feeling the pressure of some type of immediate response. The letter should make it easy for the potential donor or GC to decline and may include statements such as, “you don’t even need to respond to this if you don’t want to,” or “we understand if this is not something you are interested in pursuing and we just appreciate you taking the time to think about it.” The letter may also incorporate the option for a potential collaborator to speak with an RE or fertility counselor and obtain more information prior to making a decision.


The fertility counselor should prepare the patient for the real possibility that the individual they ask or that person’s spouse/partner may say “no,” either initially or after they have had the chance to ask questions of medical or mental health personnel. The counselor can aid the patient in positively reframing what they may perceive to be another setback to creating a family. For fertility counselors who are embedded in or work closely with fertility clinics, it can be helpful to create written materials that are easily accessed by the patient and cover issues to consider when choosing a known collaborator, as well as guidance regarding how to ask a family member or friend to participate as a gamete donor or GC. (See Addendum 10.1.)


Once the fertility patient has identified their known collaborators and is referred to the fertility counselor for the psychosocial counseling and evaluation process, it is important for the fertility counselor to clearly outline the components of the process and the extent of their role. For example, the known gamete recipient or IP counseling session is usually psycho-educational in nature; it is an opportunity for the recipients or IPs to explore treatment and life-long issues specific to using a known collaborator. However, the clinical interview with the known gamete donor/GC and their husband/partner and psychological testing is an assessment of whether the donor or GC is an appropriate candidate, as well as psycho-educational about the process and implications of participation. The purpose of the group interview is to facilitate an exchange of information between all parties and identify each person’s expectations regarding treatment and future relationships, including the degree of openness with family, friends and children born from the process.


As exemplified in the vignette above, it is not uncommon for fertility patients involved in known arrangements to express that they do not understand the need for a family member or close friend to undergo a counseling and evaluation process, or why all parties must participate in a group interview when “we already know everything about one another.” They may also communicate the sentiment that the process is an undue burden on someone who has agreed or volunteered to provide them with this precious gift. We usually respond to these patient concerns with statements such as, “you have very close relationship (or “you are dear friends”) and that’s wonderful, and we want to help you to stay that way as you proceed through this process and once you have created a family.”



Psychosocial counseling and evaluation process in known arrangements


Tables 10.1 and 10.2 provide examples of questions to be included in clinical interviews with known recipients/IPs and gamete donors/GCs, respectively. Please note that these questions are in addition to the standard questions asked in recipient, IP, donor and GC interviews (see Chapters 7, 8 and 9 of this book). In the sub-sections below we will return to the case of Maria and Aaron and highlight some common issues that arise during the counseling and evaluation process with known participants in third party reproduction.



Table 10.1

Known recipients and intended parents: questions for the clinical interviews.










  • How did you each arrive at the decision to use a known donor/GC?



  • Who asked whom?



  • Do either of you have any concerns about using a known donor/GC?



  • What is the history of your relationship with the donor/GC and their spouse/partner?



  • FOR SIBLING-TO-SIBLING ARRANGEMENTS: What has been the role, if any, of your parents? What has been or what do you anticipate to be the response of your parents?



  • What has been or what do you anticipate will be the response of other family or friends?



  • How would you feel if the donor/GC were not allowed to proceed with the arrangement for either medical or psychological reasons?



  • How might this arrangement affect your future relationship with the donor/GC and their spouse/partner? How might a negative treatment outcome affect the relationship?



  • How many treatment cycles do you expect the donor/GC to complete?



  • What are your expectations of the donor/GC’s role in the life of your child(ren)?



  • Do you have any expectations of the donor/GC and their spouse/partner regarding custody arrangements for your child(ren) in the event of death?



  • What are your thoughts about disclosure to your child(ren)? To the donor’s child(ren)/future children? To family and friends?



  • Have you discussed your plans for disclosure with the donor/GC and their spouse/partner?



  • If you are NOT planning to disclose to your child(ren), or are planning to disclose at an older age, have you thought about how you will manage the information so your children do not find out accidentally?



  • Have you thought about how you may wish to thank the donor/GC?



  • FOR RECIPIENTS: Have you discussed with the donor and their spouse/partner their expectations for cryopreservation and the disposition of excess embryos created using their gametes, selective reduction, or termination for a fetal anomaly?



  • FOR IPs: How many embryos do you anticipate wanting to transfer? Have you considered whether the GC and her spouse/partner are comfortable with carrying multiples? What are your feelings about selective reduction? Termination for a fetal anomaly? Have you discussed this with the GC?



Table 10.2

Known donors and gestational carriers: questions for the clinical interviews.










  • What is your motivation for being a known donor/GC?



  • Who asked whom?



  • Did you experience any pressure or feel an obligation to be a donor/GC because of your relationship with the recipients/IPs? Do you feel you can say “no” to the recipients/IPs? Do you wish there was a medical or psychological reason that would exclude you from being a donor/GC?



  • What is the history of your relationship with recipient/IPs?



  • FOR SIBLING-TO-SIBLING ARRANGEMENTS: What has been the role, if any, of your parents in the process? What has been or what do you anticipate to be the response of your parents?



  • Who have you told about your plans to be a known donor/GC? What has been or what do you anticipate will be the response of other family or friends? Do you know how the recipients/IPs feel about others knowing?



  • How would you feel if you were unable to be a donor/GC for either medical or psychological reasons?



  • How many treatment cycles are you willing to participate in?



  • How would you feel if treatment was not successful (e.g., treatment did not result in a pregnancy)?



  • How would you feel if the child(ren) was born with a medical problem?



  • Would you perceive a child(ren) born from this process as your own?



  • What are your expectations regarding your role in the child(ren)’s life?



  • If the recipients/IPs died, would you expect to receive custody of a child born from this process?



  • What are your thoughts about identity disclosure to a child(ren) born from this process? To your own children/future children? How would you feel if the recipients/IPs felt differently about disclosure?



  • FOR DONOR: What are your wishes regarding cryopreservation and disposition of embryos created using your gametes? Thoughts about termination for fetal anomaly? Selective reduction? Have you discussed these issues with the recipient(s)?



  • FOR GC: Have you considered how many embryos you are willing to have transferred? Are you comfortable carrying a multiple pregnancy? Are you aware of the risks associated with carrying a multiple pregnancy? What are your feelings about selective reduction? Termination for a fetal anomaly? Have you discussed these issues with the IPs?

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Feb 2, 2017 | Posted by in OBSTETRICS | Comments Off on Counseling known participants in third party reproduction

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