Treating infertility as a missing capability, not a disease: a capability approach.

Infertility patients and patient advocates have long argued for classifying infertility as a disease, in the hopes that this recognition would improve coverage for and access to fertility treatment. However, for many fertility patients, including older women, single women and same-sex couples, infertility does not represent a true disease state. Therefore, while calling infertility a 'disease' may seem politically advantageous, it might actually exclude patients with 'social' or 'relational' infertility from treatment.

Live birth rates in in vitro fertilization cycles with five or fewer follicles.

Purpose: To evaluate live birth rates (LBRs) for in vitro fertilization (IVF) cycles with ≤5 follicles at trigger, with the goal of helping patients with low follicle counts decide whether to proceed to retrieval.

Methods: This is a retrospective cohort study from an urban, university-affiliated fertility center. All IVF cycles that yielded <10 oocytes between 2016 and 2020 were reviewed.

Experiences and intentions of patients undergoing medically indicated oocyte or embryo cryopreservation: a qualitative study.

Study Question: What structural (logistical) and psychological challenges do patients who cryopreserve oocytes or embryos for medical reasons face, including possible barriers to using their frozen materials?

Summary Answer: The majority of women who underwent oocyte or embryo cryopreservation for medical reasons reported a desire to use their frozen oocytes or embryos but had been impeded by ongoing medical issues, the need for a gestational carrier, or the lack of a partner.

What Is Known Already: Current data suggest that many women who have frozen oocytes or embryos for medical indications are concerned about the prospect of infertility and have unique emotional and financial needs that differ from patients with infertility. Further, most patients have not returned to use their cryopreserved materials.

Determining the right "dose" of genetic testing for gamete donors.

Importance: Genetic testing of gamete donors is becoming increasingly comprehensive and now often includes expanded carrier screening. Some argue that testing has gone too far, whereas others propose that testing is not extensive enough. Thinking critically about how much genetic testing is appropriate for gamete donors is crucial for ensuring that market forces alone do not determine the level of testing that is performed.

A balancing act: sex selection after pre-implantation genetic testing for aneuploidy for first versus second baby.

Study Question: How often do patients undergoing frozen embryo transfer (FET) after preimplantation genetic testing for aneuploidy (PGT-A) choose to select for sex and do sex selection rates differ before and after successful delivery of a first baby?

Summary Answer: When a choice was available between male and female embryos, patients selected the sex more frequently when trying to conceive the second child (62%) as compared to the first child (32.4%) and most commonly selected for the opposite sex of the first child.

What Is Known Already: Sex selection is widely available in US fertility clinics.

Evaluating Expanded Noninvasive Prenatal Screening.

Public attention has been drawn recently to the commercial availability of noninvasive prenatal screening for rare genetic conditions, despite estimates that the positive predictive value of such tests is low. Many have focused on the importance of educating patients on the difference between screening and diagnostic testing so that they are adequately prepared for the possibility of a false-positive result. Even so, we question whether expanded noninvasive prenatal screening is ready to be used a screening tool.

Navigating parent-child disagreement about fertility preservation in minors: scoping review and ethical considerations.

Background: Offering fertility preservation (FP) prior to gonadotoxic therapy, including cancer care and gender-affirming treatment, is now considered standard of care. Periodically, parents and children disagree about whether to pursue FP. However, it is unknown how often this occurs and how disagreement is handled when it arises.

Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?

Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests of the fetus as a potential future child. We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited.

Legal and Ethical Analysis of Advertising for Elective Egg Freezing.

This paper reviews common advertising claims by egg freezing companies and evaluates the medical evidence behind those claims. It then surveys legal standards for truth in advertising, including FTC and FDA regulations and the First Amendment right to free speech. Professional standards for medical advertising, such as guidelines published by the American Society for Reproductive Medicine (ASRM), the American College of Obstetricians and Gynecologists (ACOG), and the American Medical Association (AMA), are also summarized.

Noninvasive Prenatal Whole Genome Sequencing: Pregnant Women's Views and Preferences.

Objective: To assess pregnant women's views and preferences on noninvasive prenatal whole genome sequencing.

Methods: A survey was offered to 805 pregnant women receiving prenatal care in practices affiliated with a large, tertiary care maternity hospital. Respondents were asked to envision undergoing prenatal whole genome sequencing and discuss their preferences and reasons for receiving different categories of genomic results, organized by actionability, severity, prevalence, and age of onset.

Who Should Regulate Preimplantation Genetic Diagnosis in the United States?

Unlike in many European countries, preimplantation genetic diagnosis (PGD) is not regulated in the United States. As a result, PGD may be used for any condition for which genetic testing is available, at the discretion of fertility specialists and their patients. This essay explores the question of who should be responsible for regulating PGD in the United States.

The Ethical Case for Mandating HPV Vaccination.

When the HPV vaccine was released over a decade ago, there was intense opposition to mandating the vaccine, including among bioethics and legal scholars. Some of the original concerns are now obsolete, while other objections continue to present an obstacle to mandating the vaccine. This essay responds to earlier critiques of mandatory HPV vaccination and offers a series of arguments in support of a vaccine mandate.

Comparative preimplantation genetic diagnosis policy in Europe and the USA and its implications for reproductive tourism.

Unlike many European nations, the USA has no regulations concerning the use of preimplantation genetic diagnosis (PGD), a technique employed during some fertility treatments to select embryos based on their genes. As such, PGD can and is used for a variety of controversial purposes, including sex selection, selection for children with disabilities such as deafness, and selection for 'saviour siblings' who can serve as tissue donors for sick relatives. The lack of regulation, which is due to particular features of the US political and economic landscape, has ethical and practical implications for patients seeking PGD around the world.

The human genome as public: Justifications and implications.

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome - its common nature - has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing.

Views of American OB/GYNs on the ethics of prenatal whole-genome sequencing.

Objective: Given public demand for genetic information, the potential to perform prenatal whole-genome sequencing (PWGS) non-invasively in the future, and decreasing costs of whole-genome sequencing, it is likely that OB/GYN practice will include PWGS. The goal of this project was to explore OB/GYNs' views on the ethical issues surrounding PWGS and their preparedness for counseling patients on its use.

Methods: A national survey was administered to 2500 members of American Congress of Obstetricians and Gynecologists.