EXECUTIVE SUMMARY
Reproduction options for cancer patients raise a number of ethical issues for the welfare of patients and resulting children. Some updated ethics recommendations include:
• Emerging techniques should be offered only as part of an IRB-approved research plan, with full disclosure of risks and uncertainty of benefits.
• If a minor objects to fertility preservation treatment, the procedure should not be performed, regardless of his or her parents’ wishes.
• Patients may use preimplantation genetic testing of embryos to determine the risks of a child developing a health-affecting condition.
Multiple ethical issues related to reproduction in the context of cancer are addressed in an updated position statement from The American Society for Reproductive Medicine’s (ASRM’s) Ethics Committee.1
“The recent update of our opinion discusses a host of ethical issues that can present when a patient faces a diagnosis and treatment protocol likely to result in future infertility,” says Judith Daar, JD, chair of ASRM’s ethics committee. These updates include:
• Distinctions and recommendations regarding established vs. experimental therapies.
This includes experimental protocols such as ovarian and testicular tissue cryopreservation. The ethics committee advises that such emerging techniques should be offered only as part of an IRB-approved research plan, with full disclosure of risks and uncertainty of benefits to the patient.
“Elective oocyte or semen cryopreservation is well-established and now frequently offered,” notes Louise P. King, MD, JD, an assistant professor of obstetrics, gynecology, and reproductive biology at Boston-based Harvard Medical School.
For women, success rates are not as well-defined. “Thus, their ability to preserve a chance at fertility with their own genetic material is not as easily ‘guaranteed’ as for men,” says King.
• The ability of minors to give consent to fertility preservation.
The ethics committee recognizes that most post-pubertal minors are capable of assent or objection when presented with fertility preservation options. “The committee believes that if a minor objects to any offered treatment, the procedure should not be done, despite parental wishes,” says Daar.
With children facing cancer diagnosis who are old enough to set aside semen or oocytes, a larger set of ethical questions arise. “These are highly complex and require protecting children’s ability to make decisions independent of their parents,” says King.
• The welfare of expected offspring.
Patients may wish to seek preimplantation genetic testing of any embryos formed via IVF treatment to determine the risk profile for developing a health-affecting condition at some point during the child’s life. “The committee supports the use of these testing technologies in this situation as ethically justified,” says Daar.
Patients should consider whether to undergo genetic testing to identify and exclude embryos that carry any genetic predisposition to cancers. “Most cancer patients may pass along a potential genetic predisposition,” says King.
At the time of oocyte or semen cryopreservation, no final decisions need to be made. “For men, this is such an easy process. They can be counseled on the process and cost and will likely proceed forward,” says King.
For women, the process can delay cancer treatments. “Fertility specialists typically work closely with oncologists to coordinate care,” says King.
• The need for fertility providers to counsel patients about preparing advance directives that direct the disposition of cryopreserved gametes and embryos in the event the patient dies before any or all fertility treatment is undertaken.
“The complex legal structure surrounding posthumous reproduction is a compelling incentive for patients to specify their preferences for postmortem gamete and embryo disposition,” says Daar.
Often Not Straightforward
Fertility preservation for medical reasons — primarily cancer diagnoses — is “sometimes straightforward, but often not,” says Linda D. Applegarth, EdD, clinical associate professor of psychology at the Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine at Weill Cornell Medical College in New York City.
For women of reproductive age with a poor prognosis, the process of freezing eggs or embryos can be complicated. “The medical procedures for cryopreservation can be extremely medically and emotionally taxing at a time when the patient is already under a great deal of stress,” says Applegarth. It means that cancer therapy must be postponed until after an egg retrieval. If embryos are created, then decisions must be made about disposition of those embryos were the patient to die.
A single woman might choose to use donor sperm in order to create embryos, rather than freezing eggs only. “Or sometimes a single woman will bring her boyfriend as a sperm provider. What are his rights and responsibilities, should she pass away?” asks Applegarth. Both parties need to understand the implications of creating embryos while not being in a fully committed relationship. Women typically must be in remission for three to five years before being cleared to use frozen eggs or embryos. “It would be ethically negligent on the part of fertility clinic personnel not to have a formalized plan established with the patient and her partner regarding the future disposition of embryos,” says Applegarth.
At the same time, failing to inform cancer patients about the availability of fertility preservation options “is also negligent — and, in the minds of many patients, unethical,” says Applegarth.
Patients need to consider their own prognosis. “Children suffer greatly at the death of a parent. Yet, many studies show children in single-parent homes also do very well,” says King. All that is required ethically is that potential parents consider this ahead of proceeding forward, she explains.
Posthumous reproduction is “a very different question,” says King. Many programs require families to wait a full year after death before proceeding; many families ultimately choose not to go forward.
In short, providers should ensure that patients with cancer are considering all the “downstream” issues, says King. However, expecting individual reproductive endocrinologists to fully address all of the relevant ethical issues is unrealistic. “As with anything in medicine, it can sometimes be impossible to truly convey everything to patients,” says King.
A good example is DNR discussions. Patients have seen multiple examples of successful CPR on TV. “Thus, it’s very hard to explain that true CPR is somewhat brutal and rarely successful,” say King. The same is true of fertility preservation in cancer patients. “No matter how forthright providers are about the low chance of success or possible drawbacks, patients may not believe they will personally have poor outcomes,” says King.
REFERENCE
1. Ethics Committee of the American Society for Reproductive Medicine. Fertility preservation and reproduction in patients facing gonadotoxic therapies: an Ethics Committee opinion. Fertil Steril 2018; 110(3):380-386.
SOURCES
• Linda D. Applegarth, EdD, Clinical Associate Professor of Psychology/Director of Psychological Services, The Perelman/Cohen Center for Reproductive Medicine, Weill Cornell Medical College, New York City. Phone: (646) 962-3315. Email: [email protected].
• Judith Daar, JD, Visiting Professor of Law, School of Law, University of California, Irvine. Phone: (949) 824-9674. Email: [email protected].
• Louise P. King, MD, JD, Assistant Professor of Obstetrics, Gynecology, and Reproductive Biology, Harvard Medical School, Boston. Phone: (617) 667-4030. Email: [email protected].
Multiple ethical issues related to reproduction in the context of cancer are addressed in an updated position statement from The American Society for Reproductive Medicine’s Ethics Committee.
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