Designing Our Future World

The providers’ and patients’ experiences presented here reveal how powerful technological advances can shape current and future human lives in profound and at times unexpected ways, with critical medical as well as psychological, social, cultural, familial, moral, existential, and financial implications. In the infertility industry, laissez-faire market capitalism, with little regulation, has created a “Wild West.” At the same time, these rapidly advancing technologies remain expensive and not available to everyone, widening disparities between rich and poor and raising key questions about social justice—from access to care to eugenics. As we evolve ever further into these brave new worlds, the individuals here, wrestling with these conundrums today, can benefit us all.

Emotional Roller Coasters

Patients face stresses from not only infertility procedures themselves but also the psychological and social aspects of these interventions, including uncertainties, failures, costs, and loss of dreams. These physical, social, psychological, financial, and moral strains can exacerbate each another. Patients who quickly succeed in getting a “take-home baby” generally feel pleased with their treatment. But treatment failures can mean loss of purpose, identity, hopes, and dreams, thus embittering, confusing, and disturbing patients. Doctors may be overly optimistic, fueling eventual patient disappointments. Couples can disagree over how much effort, money, and time to spend in trying to have a healthy child—how to weigh medical odds against financial and psychological costs. External supports range from negative to positive and from weak to strong. Well-meaning outsiders may offer suggestions that patients feel are unhelpful. These reproductive journeys can strain marriages, friendships, and jobs. Communication about these issues can help but be difficult.

Choosing Education

Physicians in several fields, patients, families, and the public at large would benefit from more education and understanding regarding infertility and its treatment—from information about basic biology and causes of infertility to specific procedures and the ethical, legal, social, and psychological issues that can arise. Patients must comprehend myriad new facts, which can take considerable effort, struggling to grasp important aspects of statistics and genetics, including recessive genes and variants of unknown significance. Many physicians in and outside of the field of infertility also have knowledge gaps about these medical (e.g., genetic), psychological, and ethical issues and vary in how well they educate patients.

Choosing Supports

Patients struggle to cope with ethical, social, and psychological challenges in several ways, from trying to manage expectations to seeking various forms of support from family, friends, and others. Shame, stigma, and disappointment lead many patients to disclose their infertility and treatment to few, if any, family members; and consequently, they derive little support from them. Abortion or embryo screening due to a mutation, for instance, can be difficult to reveal because outsiders may be pro-life. Patients respond to perceived shortcomings of families and friends in several ways—from trying to educate these individuals or limit interactions to seeking new supports, whether from fellow patients or psychotherapists. Patients frequently seek new social supports—from formal to informal, from in person to online, and from individual psychotherapy to support groups and large organizations. Many prospective parents, who might benefit from mental health treatment, resent the cost as insurance commonly covers little, if any, of the expense. Face-to-face and online groups each offer pros and cons.

“Family Balancing”

Doctors and patients confront decisions of whether to perform “positive selection”—to choose embryos for various socially desired characteristics—most commonly sex but also deafness and dwarfism. Physicians routinely screen embryos for sex not only to prevent the transmission of serious sex-associated diseases (e.g., autism) but also for “family balancing”—though differing widely in how they define this concept. University-affiliated clinics tend to consult formal external ethics committees about these issues, while free-standing private clinics do not. While many countries explicitly prohibit social sex selection, US providers regularly perform it, raising concerns about a possible “slippery slope” toward eugenics. In the near future, screening for genes associated with other non-medical “desired traits” such as blond hair and blue eyes will probably also be developed and requested. Providers and patients wrestle with whether certain types of embryo selection might restrict a child’s “open future” and ability to make key choices for him- or herself, as well as how to uphold the child’s best interests.

Choosing Embryos to Avoid Disease

Preimplantation genetic diagnosis (PGD) lets patients reject embryos with certain genes (e.g., for breast cancer, cystic fibrosis, or Down syndrome). Increasingly, researchers are also using whole-genome and whole-exome sequencing to identify genetic markers associated with other diseases. Doctors and patients can also choose embryos with certain immune system markers or human leukocyte antigens to enable the future child to donate stem cells or other tissues to an existing child with a severe disease and be a so-called savior sibling. This procedure has been used for sickle-cell anemia and beta-thalassemia. In the near future, CRISPR (clustered regularly interspaced short palindromic repeats) also will let doctors insert desired genes into embryos. But providers and patients struggle with when to use PGD, for which conditions, how to decide, how many times to attempt PGD if it fails, whether to select embryos to create savior siblings, whether patients should always be told the results of genetic tests on embryos, whether to test the fetus to confirm the results, and what to do with leftover embryos—whether to freeze, discard, or donate them.

Choosing Sperm

Many prospective parents need to seek sperm from others but face complex choices as well. Both sperm and egg recipients wrestle with what to seek in a donor—from medical history to physical appearance or other, behavioral traits that are not necessarily fully inherited. Many heterosexual men resist using another man’s sperm, feeling that doing so impinges on their masculinity. Future parents confront dilemmas, too, of whether to disclose the donation to others, including to their eventual offspring. Many heterosexual couples decide to keep the donation secret and never to reveal it to their offspring. Yet psychological studies show that it is better for offspring to be told in an appropriate manner to avoid later feelings of being betrayed and deceived.

Becoming an Infertility Patient

For many patients, the first step in using these technologies is getting a referral to an infertility specialist, yet even that step can pose challenges. Several types of healthcare provider can serve as gatekeepers and refer patients to fertility specialists—obstetricians and gynecologists, general practitioners, oncologists, and genetic counselors. Yet these clinicians often have knowledge gaps regarding infertility and thus delay or fail to make referrals. Patients encounter financial barriers as well. Patients may postpone or not seek treatment because they fail to appreciate how much age can diminish fertility. Both doctors and patients can feel awkward discussing sexual activity, reproduction, and infertility because of stigma. Usually, infertile patients who pursue treatment first undergo tests to determine whether the infertility stems from the man, the woman, or both. Before proceeding to in vitro fertilization, women ordinarily attempt medications and intrauterine insemination but face a range of challenges and questions.

“A Take-Home Baby”

This introductory chapter provides an outline of the structure and themes of the book, and describes how I became interested in this topic—through both personal and professional experiences. The chapter presents a brief overview of infertility and several assisted reproductive technologies (ARTs), including new technologies (e.g., gene editing and CRISPR) and their history; recent statistics on use of these interventions in the United States and elsewhere; several relevant current policies, guidelines, and recent legal cases in the United States, Europe, and elsewhere (e.g., from the FDA, CDC, and the American Society for Reproductive Medicine [ASRM]) pertaining to sale and purchase of so-called third-party gametes (i.e., human eggs and sperm); costs and insurance coverage; ethical issues posed by ARTs (e.g., regarding eugenics); and other aspects of these treatments. The chapter also provides an overview of the qualitative methods used in the research that forms a basis of the book.

“How Much Is a Child Worth?”

Patients face dilemmas of how much to pay for these technologies—how much a child is worth. Countries range widely in their laws and regulations concerning insurance coverage but generally have restraints. Prospective parents commonly draw on present or future savings or income they might otherwise dedicate to graduate school or other long-term goals. Yet uncertainties can persist about how long treatment will take. Medical, financial, and legal stresses mount regarding both the total costs and the eventual extent of insurance coverage. Physicians cannot wholly foresee the kind or amount of necessary treatment, frustrating patients. Critics have also argued that many clinics are too “entrepreneurial” and profit-oriented, raising additional ethical and policy questions.