Judith Daar

The Case for a Parental Duty to Use Preimplantation Genetic Diagnosis for Medical Benefit

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial risk of inheriting a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition.

Accessing Reproductive Technologies: Invisible Barriers, Indelible Harms

The use and success of assisted reproductive technologies (ART) over the past decade has contributed perceptibly to family formation nationwide. Today, 3 of every 100 children born owe their existence to some form of assisted conception. Despite, or perhaps because of, its technical successes, a growing body of evidence suggests that barriers to ART are being constructed to prevent procreation among select populations. The articles theme is one of harm, specifically the harm that befalls patients, physicians, offspring and society when fertility treatments are denied on the basis of personal characteristics, including race, marital status and sexual orientation. While ART is widely perceived as a free market good, the provision of reproductive services is increasingly subject to public and private barriers that target prospective parents whose procreative rights have been historically dismissed or undervalued. These barriers create limitations to treatment based on patient immutable characteristics and social structures, ultimately imposing undue burdens of the affected individuals right to procreative liberty. The central portion of the paper analyzes the harms from ART denials to four distinct cohorts - patients, providers, offspring, and society - suggesting possible solutions to address or forestall the offending conduct. Harms to patients from treatment denials include forced childlessness as well as dignitary harms, the latter arising when the fundamental right to procreative decision-making is repressed. Harms to ART providers take the form of economic and reputational loss, amenable to repair only by adhering to established norms governing physician autonomy which balance patient and provider needs. Harms to offspring encompass damage to existing and never-born children, diminishing the life and potential existence of children conceived through technological means. Finally, harms to society are reminiscent of the damage inflicted by the American eugenics movement of the early 20th century. Todays deprivation of reproductive opportunity is compared to the coercive sterilization tactics of yesteryear, reminding us that seemingly well-meaning expressions about the welfare of the human race may be a pretext for nefarious social engineering aspirations.

Oocyte or embryo donation to women of advanced reproductive age: an Ethics Committee opinion

Advanced reproductive age (ARA) is a risk factor for female infertility, pregnancy loss, fetal anomalies, stillbirth, and obstetric complications. Oocyte donation reverses the age-related decline in implantation and birth rates of women in their 40s and 50s and restores pregnancy potential beyond menopause. However, obstetrical complications in older patients remain high, particularly related to operative delivery and hypertensive and cardiovascular risks. Physicians should perform a thorough medical evaluation designed to assess the physical fitness of a patient for pregnancy before deciding to attempt transfer of embryos to any woman of advanced reproductive age (>45xa0years). Embryo transfer should be strongly discouraged or denied to women of ARA with underlying conditions that increase or exacerbate obstetrical risks. Because of concerns related to the high-risk nature of pregnancy, as well as longevity, treatment of women over the age of 55 should generally be discouraged. This statement replaces the earlier ASRM Ethics Committee document of the same name, last published in 2013 (Fertil Steril 2013;100:337-40).

Provision of fertility services for women at increased risk of complications during fertility treatment or pregnancy: an Ethics Committee opinion

This opinion addresses the ethics of providing fertility treatment to women at elevated risk from fertility treatment or pregnancy. Providers ethically may treat women at elevated risk provided that they are carefully assessed; that specialists in their medical condition are consulted as appropriate; and that patients are fully informed about risks, benefits, and alternatives, including oocyte and embryo donation, use of a gestational surrogate, not undergoing fertility care, and adoption. Providers also may conclude that the risks are too high for them to treat particular patients ethically; such determinations must be made in a medically objective and unbiased manner and patients must be fully informed of the decision. Counseling of women who wish to initiate fertility treatment with underlying medical conditions that confer increased risk during treatment or pregnancy should incorporate the most current knowledge available, being cognizant of the womans personal determinants in relation to her reproductive desires. In such a way, both physician and patient will optimize decision making in an ethically sound, patient-supportive context.

Financial compensation of oocyte donors: an Ethics Committee opinion

Financial compensation of women donating oocytes for infertility therapy or for research is justified on ethical grounds and should acknowledge the time, inconvenience, and discomfort associated with screening, ovarian stimulation, and oocyte retrieval, and not vary according to the planned use of the oocytes, the number or quality of oocytes retrieved, the number or outcome of prior donation cycles, or the donors ethnic or other personal characteristics. This document replaces the document of the same name, last published in 2007 (Fertil Steril 2007;88:305-9).

Frozen Embryo Disputes Revisited: A Trilogy of Procreation‐Avoidance Approaches

n recent years, courts have increasingly found themselves arbiters of disputes in the emotionally charged I area of assisted reproductive technologies. Legal disputes are hardly surprising in the world of infertility medicine, where millions of patients’ spend billions of dollars2 in efforts to have a child. Increasingly, these efforts produce embryos that are frozen for later use, at once maximizing a couple’s chances for success and minimizing the medical intrusiveness that necessarily accompanies most forms of assisted reproductive techn~logies.~ But with over 100,000 embryos in frozen storage in the United States4 and a divorce rate of 40 to 50 percent,s it is not surprising that disputes over the disposition of these embryos are arising, causing the legal landscape surrounding these technologies to continue to expand. The most recent addition to the jurisprudence is AZ. v. B.Z.,6 a case decided by the Massachusetts Supreme Judicial Court on March 3 1,2000. A.Z. is the third in a trilogy of state high court opinions addressing disputes between divorcing couples over the disposition of frozen embryos.’ Each case, though factually similar, yields a different legal analysis, making a uniform understanding of the law an elusive goal. Although the decision-malung approach of each court differed, all three high courts nonetheless ultimately adopted the same fundamental test: When one of the gamete donors wishes to avoid procreation, that party will prevail.

Regulating the Fiction of Informed Consent in ART Medicine

Andrea Gurmankin (2001) bravely ventures into the harrowing and dynamic world of reproductive medicine to investigate its most vulnerable feature, the practice of informed consent. Her empirical research explores the level of frank risk disclosure provided by assisted reproductive technology (ART) programs to young women who contemplate selling their eggs to infertile couples. Not surprisingly, Gurmankin’s research reveals that most programs do not volunteer risk information and many provide inaccurate or incomplete risk information when queried by potential egg donors. The article’s empirical foundation and dismaying conclusions prompt inquiry into whether informed consent can ever be a practical reality in a x8eeld of medicine grounded in the trilogy of rapidly advancing technologies, emotionally charged expectations, and commercialism. To begin, the x8ection of informed consent in the broader doctor-patient relationship is well described. Studies indicate that as physicians feel increased pressure to see more patients, particularly in the managed care setting, full disclosure and an open discussion are less likely to occur (Furrow et al. 1995). At the same time, patient comprehension is low and decision making about medical choices is often based on factors other than accurate information, such as fear, emotion and religious beliefs (Furrow et al. 1995; Brock and Wartman 1990; Katz 1993). To posit that egg donors receive less risk information and therefore have less opportunity for informed consent than patients in other medical specialty areas is truly a bleak prospect. And while Gurmankin does not actively compare ART patients with other patient populations, she does reference the psychological literature on decision making and speculate about its applicability to oocyte donors, furthering her concern about the basis on which a donor’s decision is made. The role of informed consent in oocyte donation is further complicated by the way in which egg donors are perceived in the overall treatment plan for the infertile couple. Granted, an egg donor is essential to successful treatment of the couple, but is she treated as a patient, quasipatient, or even nonpatient by the physician monitoring her progress in the donation process? If a single physician is retained to perform both egg retrieval from the donor and IVF for the intended mother, a clear conx8fict of interest arises. The physician must simultaneously maximize the opportunity for pregnancy by retrieving as many eggs as possible, while minimizing the risk of harm to the donor by limiting the number of eggs that are produced. Since it is the infertile couple who generally pays the physician’s fees, it seems likely this conx8fict would more often be resolved in favor of the sponsoring couple. Perhaps physicians are not fully cognizant of this conx8fict because they don’t view the egg donor as a patient. Because she gains no medical benex8et from the physician’s services, she may be perceived as a pure instrumentality to the doctor’s therapeutic capabilities, which are directed solely at the infertile couple. Even if the egg donor is cared for by an independent physician, one who is not involved in the treatment of the infertile couple, the doctor-patient relationship still dex8ees traditional parameters. In the course of (euphemistically) donating her eggs, the donor derives and the physician provides no medical benex8et. If informed consent is truly a doctrine in which risks and benex8ets are disclosed for the sake of rational balancing, it is logical that the absence of benex8et in the egg donor scenario would confound the disclosure process. If a doctor can offer no medical benex8ets, she may be inclined to minimize the medical risks. Commercial gain is such a rare patient goal that at this juncture it simply can’t be reconciled with the informed-consent doctrine. In California, lawmakers became aware of the potential vulnerability of egg donors and drafted legislation to address some of those concerns. In February 2000 State Sena-

Child-rearing ability and the provision of fertility services: an Ethics Committee opinion

Fertility programs may withhold services from prospective patients on the basis of well-grounded reasons that those patients will be unable to provide minimally adequate or safe care for offspring. This document was reviewed and updated; this version replaces the previous version of this document, last published July 2013 (Fertil Steril 2013;100:50-53).

Defining embryo donation: an Ethics Committee opinion

Building families through the adoption of children has been supported by human society throughout history. The ethical appropriateness of patients donating embryos to other patients for family building, or for research, is well established and is affirmed by this Committee. The use of the term adoption for embryos is inaccurate and should be avoided. This document replaces the ASRM Ethics Committee statement by the same name, last published in 2013 (Fertil Steril 2013;99:1846-7).

Informing offspring of their conception by gamete or embryo donation: an Ethics Committee opinion

This document discusses the ethical implications of informing offspring about their conception using gamete or embryo donation. It replaces the 2013 ASRM Ethics Committee document of the same name (Fertil Steril 2013;100:45-9).