Leslie P Francis

University of Utah | UOU · College of Law

Social media are now at the heart of political debate and discourse. Yet these media present challenges of epistemic justice because of the voices they may both amplify and suppress and the influence they wield. Contributions may be difficult to evaluate, especially if the identity of contributors is masked or unknown. Three approaches to these pro...

Disability, Health, Law, and Bioethics - edited by I. Glenn Cohen April 2020

Although inadequate immunization is a significant public health problem, as covid-19 is an urgent reminder, it has been largely ignored in amateur youth sports. By comparison, safety issues such as concussions have drawn extensive concern. This article examines the case for immunizing athletes who participate in amateur sports for youth. It begins...

Cambridge Core - Medical Law, Ethics and forensic Medicine - Disability, Health, Law, and Bioethics - edited by I. Glenn Cohen

Scientific research using human embryos advances human health and offspring well-being and provides vital insights into the mechanisms for reproduction and disease. Research involving human embryos is ethically acceptable if it is likely to provide significant new knowledge that may benefit human health, well-being of the offspring, or reproduction...

In 2013, the U.S. Supreme Court held that naturally occurring human genes are not patentable subject matter. This decision, invalidating patents held by Myriad Genetics involving genes affecting breast cancer, appeared to further the constitutional policy behind intellectual property protection to promote scientific progress and to make genetic tes...

This Ethics Committee report outlines the interests, obligations, and rights of all parties involved in gamete and embryo donation: both males and females who choose to provide gametes or embryos for use by others, recipients of donated gametes and embryos, individuals born as a result of gamete or embryo donation, and the programs that provide don...

Women with disabilities face challenges related to their disabilities of access and accommodation for infertility care. This chapter explores the societal and structural barriers to infertility care these women experience, including legal issues, training and attitudes of physicians, ability to pay, lack of adaptive equipment, inexperience of provi...

The Ethics Committee recommends that in vitro fertilization (IVF) centers develop patient-centered policies regarding requests for futile treatment. In most cases, clear communication can avoid a direct conflict, but clinicians ethically may refuse to provide treatment believed to be futile or to carry a very poor prognosis. In certain instances, c...

Federal and state budgetary constraints continually challenge Medicaid. The effects of benefit cuts are common: long waiting lists for community‐based services, skeletonized drug formularies with unstable access to long‐term prescriptions, no psychiatric therapy for people immobilized by depression, and no more than fourteen days of acute hospitali...

People with intellectual disabilities face proceedings to terminate their parental rights with disturbing regularity, with protecting the interests of offspring the primary justification. Although protecting children from harm is surely critical, these termination proceedings involve problematic assumptions about how fitness to parent is understood...

Professionals who discover misconduct or other undisclosed information that would be material to the participation of another party (such as a donor, gestational carrier, intended parent, or lawyer) in an assisted reproductive technology arrangement should encourage disclosure to that party. In some instances, it is ethically permissible for the ph...

Planned oocyte cryopreservation ("planned OC") is an emerging but ethically permissible procedure that may help women avoid future infertility. Because planned OC is new and evolving, it is essential that women who are considering using it be informed about the uncertainties regarding its efficacy and long-term effects.

Intended parents engage with gestational carriers in an attempt to achieve their personal reproductive goals. All gestational carriers have a right to be fully informed of the risks as well as the contractual and legal aspects of the gestational-carrier process. Gestational carriers have autonomy in making their own decisions regarding medical care...

Clinicians should encourage disclosure between intimate partners but must maintain confidentiality in cases where there is no prospect of harm to the partner and/or offspring. In cases where one member of a couple refuses to disclose relevant health information to the other partner and there exists a risk of harm to the unaware partner and/or offsp...

Clinics may develop a policy to disallow selecting which embryos to transfer based on sex and choose to use only embryo quality as selection criteria. Clinics may also develop a policy to use randomization to select those embryos for transfer if more embryos suitable for transfer are available than can be transferred.

Posthumous gamete (sperm or oocyte) retrieval or use for reproductive purposes is ethically justifiable if written documentation from the deceased authorizing the procedure is available. Retrieval of sperm or eggs does not commit a center to their later use for reproduction, but may be permissible under the circumstances outlined in this opinion. E...

Preimplantation genetic testing for monogenic diseases for adult-onset conditions is ethically permissible for a range of conditions including when the condition is serious and no safe, effective interventions are available. The Committee strongly recommends that a genetic counselor experienced with PGT-M counsel patients considering such procedure...

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).

A persistent paradox apparently infects disability civil rights claims. On the one hand, these rights claims are often understood to apply only to those who are sufficiently impaired in body or in mind to qualify for them because of the disadvantage they endure. On the other hand, asserting significant impairments threatens to undermine the plausib...

The Anthropocene affects pandemic frequency and severity through both changes in climate and changes in how humans interact with nonhuman animals and the natural world. Climate change has altered precipitation patterns, bringing drought, increased rainfall, or standing water to new locations. It has also affected average and high and low temperatur...

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...

Whatever happens to the Affordable Care Act (ACA) over the next few years, it is fair to assume that state Medicaid programs will be subjected to cost control measures. Despite the recent deployment of substantial arguments to the contrary, the belief still persists that the Supreme Court’s decision in Alexander v. Choate over thirty years ago stan...

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases co...

Patient requests for transfer of embryos with genetic anomalies linked to serious health-affecting disorders detected in preimplantation testing are rare but do exist. This Opinion sets out the possible rationales for a provider's decision to assist or decline to assist in such transfers. The Committee concludes in most clinical cases it is ethical...

The use of adult intrafamilial gamete donors and gestational surrogates is generally ethically acceptable when all participants are fully informed and counseled, but consanguineous arrangements or ones that simulate incestuous unions should be prohibited. Adult child-to-parent arrangements require caution in order to avoid coercion, and parent-to-a...

Objective: To review the legal issues concerning family members' access to information when patients are in the ICU. Data sources: U.S. Code, U.S. Code of Federal Regulations, and state legislative codes. Data extraction: Relevant legal statutes and regulations were identified and reviewed by the two attorney authors (L. F., M. A. V.). Study...

The meaning of "disability" has shifted with changes in public policy. Half a century ago, Congress was convinced that narrow determinations of disability are easy for physicians to make. But with the advent of universal civil rights protection against disability discrimination in the US, deciding whether particular individuals are disabled became...

Families have for decades advocated for full access to intensive care units (ICUs) and meaningful partnership with clinicians, resulting in gradual improvements in family access and collaboration with ICU clinicians. Despite such advances, family members in adult ICUs are still commonly asked to leave the patient's room during invasive bedside proc...

Building the case for research improving pain management in HIV patients is an urgent matter. Interventional research with controlled substances may need to be complemented with other research strategies, given existing legal risks and barriers. These complementary strategies — along with the research discussed by Andreae and colleagues — require a...

Patients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the p...

Benefit and harm are canonical principles in bioethics. Providers must do no harm and act in the best interests of their patients. A fundamental principle of research ethics is that research is unethical if its harms outweigh its benefits. Applying these principles requires understanding the concepts of harm and benefit, whether and how they can be...

Precision medicine is being developed today within a complex landscape of public policy, science, economics, law, and regulation. Important features of this landscape include health care financing, patent protection for new innovations, regulatory approvals of tests and therapies, patient consent and access, and protection of privacy. In these and...

The celebrations of the twenty-fifth anniversary of the ADA have sounded the somber note that people with disabilities continue to be under- and unemployed in disproportionate numbers. Health care — because it represents nearly 20% of GDP, is to some extent funded by pooled resources, and is familiar with disabilities and accommodations for them —...

Despite antidiscrimination laws, disability discrimination remains ongoing. A recent field experiment in the USA indicates that employers are significantly more reluctant to interview qualified applicants with disabilities, whether physical or mental. This reluctance is especially noticeable among smaller employers and for more experienced job appl...

Precision medicine is being developed today within a complex landscape of public policy, science, economics, law, and regulation. Important features of this landscape include health care financing, patent protection for new innovations, regulatory approvals of tests and therapies, patient consent and access, and protection of privacy. In these and...

This chapter explains how severe cognitive impairment raises distinct normative and conceptual issues. It cites the importance of recognizing whether a person with an intellectual disability possesses or lacks autonomy. Context helps determine which of the notions of autonomy is most relevant to a problem, and can specify limits before a person's a...

Many important public health, health research, and treatment goals can be furthered by the use of health information. Privacy protection, as the EU recognizes, is an important aspect for facilitating the use and transfer of this information. All too often, privacy is seen as a barrier to information use, but without adequate assurances that data wi...

The importance of genomic information for care of individual patients and for the development of knowledge about treatment efficacy is becoming increasingly apparent. This information is probabilistic and involves the use of large data sets to increase the likelihood of detecting low frequency events. Duties and rights of patients with respect to t...

David DeGrazia's Creation Ethics 1 is a fascinating effort to present a consistent account of creation in many contexts—from reproduction, to self-creation through genetic enhancement, to the creation of entire future generations. For reasons of space, this comment addresses the related discussions of bearing children in wrongful life cases (chapte...

The ethical conduct of human gamete and embryo research depends upon conscientious application of principles of informed consent developed in the context of clinical research. This document explores these principles, which entail, for example, that investigations occur under Institutional Review Board oversight. This document also discusses the com...

Physicians who are told or discover information that would be material to another party's participation in an assisted reproductive technology (ART) arrangement (such as lawyer's, donor's, gestational carrier's, or intended parent's) should encourage disclosure to that party. In some instances, it is ethically and legally permissive for the physici...

This Article contends that workplace accommodations should be predicated on need or effectiveness instead of group-identity status. It proposes that, in principle, "accommodating every body" be achieved by extending Americans with Disabilities Act-type reasonable accommodation to all work-capable members of the general population for whom accommoda...

When adolescents are seriously ill with life-limiting conditions, ideally they should receive the best available care that is tailored to their preferences about how to spend the time they have remaining. Communication with adolescent patients about their conditions and possibilities for care-as well as communication from them about their responses...

This article explores rights-based approaches to protecting disabled people against inequities in access to health care services. Understanding health care as a human right, as is found in the UN Convention on the Rights of People with Disabilities (CRPD), fails to provide theoretical machinery for responding to certain pressing challenges. An alte...

HIV prevention and treatment are undergoing impressive technological and practice changes. In-home rapid testing, prophylaxis before risky sex, and treatment as prevention give cause for remarkable optimism and suggest the possibility of an AIDS-free generation. These changes in HIV prevention and treatment might affect HIV policy in several differ...

Cross-border reproductive care (CBRC) is a growing worldwide phenomenon, raising questions about why assisted reproductive technology (ART) patients travel abroad, what harms and benefits may result, and what duties health care providers may have in advising and treating patients who travel for reproductive services. Cross-border care offers benefi...

Physicians should obtain a complete medical evaluation before deciding to attempt transfer of embryos to any woman over age 50. Embryo transfer should be strongly discouraged or denied to any woman over age 50 with underlying issues that could increase or further obstetrical risks and discouraged in women over age 55 without such issues. This state...

Risk-sharing fee structures in assisted reproduction programs charge patients a higher initial fee but provide a partial refund if treatment fails. This opinion of the ASRM Ethics Committee analyzes the ethical issues raised by these fee structures, including patient selection criteria, conflicts of interest, and patient-informed consent. This docu...

Fertility programs may withhold services when there are reasonable grounds for thinking that patients will not provide adequate child-rearing to offspring. This document was reviewed and updated and this version replaces the previous version of this document, reviewed in June 2009 (Fertil Steril 2009;92:864-7). (c) 2013 by American Society for Repr...

This document discusses the ethical implications regarding informing offspring of their conception using gamete or embryo donation. It replaces the 2004 ASRM Ethics Committee document of the same name (Fertil Steril 2004;81:527-31). ((c) 2013 by American Society for Reproductive Medicine.)

PGD for adult-onset conditions is ethically justified when the condition is serious and no safe, effective interventions are available. It is ethically allowed for conditions of lesser severity or penetrance. The Committee strongly recommends that an experienced genetic counselor play a major role in counseling patients considering such procedures....

Giubilini and Minerva ask why birth should be a critical dividing line between acceptable and unacceptable reasons for terminating existence. Their argument is that birth does not change moral status in the sense that is relevant: the ability to be harmed by interruption of one's aims. Rather than question the plausibility of their position or the...

This chapter surveys the ethical and legal issues raised by the use of informatics techniques in public health surveillance. It devotes particular attention to the surveillance capabilities being developed by public entities using data drawn from multiple sources, including electronic health records. Public entities engaged in surveillance face sig...

The use of intrafamilial gamete donors and surrogates is generally ethically acceptable when all participants are fully informed and counseled, but arrangements that replicate the results of true consanguineous or incestuous unions should be prohibited, child to parent arrangements are generally unacceptable, and parent to child arrangements are ac...

This document presents arguments that conclude that it is unethical to use somatic cell nuclear transfer (SCNT) for infertility treatment due to concerns about safety; the unknown impact of SCNT on children, families, and society; and the availability of other ethically acceptable means of assisted reproduction. This document replaces the ASRM Ethi...

Increasing individuals’ understanding and participation in their health care is good for their health and for the health care system. So goes the argument for encouraging and enhancing technologies that allow interaction between patients and their providers, including patients’ access to their health records. With electronic health records (EHRs) a...

This chapter explores issues associated with health care rationing under conditions of injustice, with particular emphasis on the elderly who are near the end of life. In the face of rising health care costs and stagnant or falling tax revenues, pressures for rationing health care on the basis of age are extensive. Many of the same arguments are de...

This chapter examines issues of distributive justice as it pertains to planning for pandemics and disasters. Pandemic plans assume that difficult decisions will need to be made about the allocation of scarce resources: vaccines, antimicrobials, hospital beds, and resource-intensive treatments such as ventilators or intensive care units. With the sp...

Medical providers have an ethical duty to immediately disclose clinical errors involving gametes or embryos; clinics should have written policies in place for reducing and disclosing errors. This document was reviewed and affirmed in 2011 and replaces the earlier document of the same name. (Fertil Steril (R) 2011; 96:1312-4. (C) 2011 by American So...

Statutes criminalizing behavior that risks transmission of HIV/AIDS exemplify use of the criminal law against individuals who are victims of infectious disease. These statutes, despite their frequency, are misguided in terms of the goals of the criminal law and the public health aim of reducing overall burdens of disease, for at least three importa...

Organ trafficking and trafficking in persons for the purpose of organ transplantation are recognized as significant international problems. Yet these forms of trafficking are largely left out of international criminal law regimes and to some extent of domestic criminal law regimes as well. Trafficking of organs or persons for their organs does not...

Human immunodeficiency virus is a serious but manageable chronic disease that affects persons of reproductive age, many of whom express a desire for biologic parenthood. This document is a revision of the original document of the same name, published in 2002 and reviewed in 2006. (Fertil Steril (R) 2010; 94: 11-5. (C) 2010 by American Society for R...

Genetic information poses an apparent paradox for justice in health care. On the one hand, genetic information seems to be exactly the kind of information that it is unjust to take into account in the distribution of important goods. On the other hand, genetic information may increasingly become useful in individual patient care as evidence for per...