Medical interventions for children born with variations in their sex characteristics: what’s the rights approach?

The book concludes by articulating what medical nihilism might entail for medical research, regulation, and treatment. There have been many proposed solutions to problems raised in this book, ranging from minor modifications to medical research (like requiring the registration of trials prior to data collection, and open access to trial data), to revolutionary changes (such as the complete socialization of medical research). These proposals for realigning medical research are evaluated, and proposals that are consistent with medical nihilism are articulated. These include stricter standards for detecting benefits and harms of medical interventions, a closer scrutiny of corporate research, and a shift in the research agenda away from barely effective pharmaceuticals toward projects with potential for greater impact, such as research on the importance of diet and exercise, and on neglected tropical diseases.

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Measuring Effectiveness

10.1093/oso/9780198747048.003.0008 ◽

2018 ◽

Author(s):

Jacob Stegenga

Keyword(s):

Outcome Measures ◽

Relative Risk Reduction ◽

Drug Approval ◽

Target Population ◽

Risk Difference ◽

General Context ◽

Measuring Instruments ◽

Clinical Settings ◽

Medical Interventions ◽

Regulatory Standards

There are three methodological challenges to measuring the effectiveness of medical interventions: the choice of good measuring instruments, the use of appropriate analytic measures, and the use of a reliable method of extrapolating measures from an experimental context to a more general context. In practice each of these challenges contributes to overestimating the effectiveness of medical interventions. These challenges suggest corrective principles. The instruments employed in clinical research should measure patient-relevant and disease-specific parameters. Effectiveness always should be measured and reported using absolute outcome measures (such as ‘risk difference’), and we should employ caution when interpreting relative outcome measures (such as ‘relative risk reduction’). Extrapolating from research settings to clinical settings should more rigorously take into account possible ways in which interventions can fail to be effective in a target population. Current regulatory standards for drug approval are insufficient to manage these problems of measurement.

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Introduction

10.1093/oso/9780198747048.003.0001 ◽

2018 ◽

Author(s):

Jacob Stegenga

Keyword(s):

Medical Practice ◽

Evidence Based Medicine ◽

Inductive Inference ◽

Formal Theory ◽

Practice Research ◽

Evidence Based ◽

Master Argument ◽

Medical Interventions ◽

Concepts Of Disease ◽

Based Medicine

This chapter introduces the book, describes the key arguments of each chapter, and summarizes the master argument for medical nihilism. It offers a brief survey of prominent articulations of medical nihilism throughout history, and describes the contemporary evidence-based medicine movement, to set the stage for the skeptical arguments. The main arguments are based on an analysis of the concepts of disease and effectiveness, the malleability of methods in medical research, and widespread empirical findings which suggest that many medical interventions are barely effective. The chapter-level arguments are unified by our best formal theory of inductive inference in what is called the master argument for medical nihilism. The book closes by considering what medical nihilism entails for medical practice, research, and regulation.

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Ethics in Social Research

10.1093/oso/9780198786580.003.0006 ◽

2018 ◽

Author(s):

Steve Bruce

Keyword(s):

Informed Consent ◽

Data Collection ◽

Research Ethics ◽

Social Research ◽

Medical Interventions ◽

Ethical Implications ◽

Social Researcher ◽

Naturally Occurring ◽

The Social ◽

Collection Phase

It is right that social researchers consider the ethical implications of their work, but discussion of research ethics has been distorted by the primacy of the ‘informed consent’ model for policing medical interventions. It is remarkably rare for the data collection phase of social research to be in any sense harmful, and in most cases seeking consent from, say, members of a church congregation would disrupt the naturally occurring phenomena we wish to study. More relevant is the way we report our research. It is in the disparity between how people would like to see themselves described and explained and how the social researcher describes and explains them that we find the greatest potential for ill-feeling, and even here it is slight.

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The Co-Occurrence of Autism and Gender Diversity

The Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions ◽

10.1093/oxfordhb/9780190910761.013.11 ◽

2020 ◽

pp. 197-211

Author(s):

Jill C. Fodstad ◽

Rebecca Elias ◽

Shivali Sarawgi

Keyword(s):

Gender Dysphoria ◽

Gender Diversity ◽

Gender Nonconforming ◽

Medical Interventions ◽

Gender Diverse ◽

Nonbinary Gender ◽

Psychiatric Conditions ◽

The Common ◽

And Gender

Gender diversity refers to gender expressions and/or gender identity experiences that vary from the common experiences of gender. Gender-diverse people may be gender nonconforming, gender nonbinary, gender fluid, gender exploring, transgender, and so forth. Some gender-diverse individuals experience gender dysphoria and/or gender incongruence and may require gender-affirming supports, including gender-affirming medical interventions. The co-occurrence of autism and gender diversity has been highlighted in a series of studies internationally as well as through rich community expressions. Studies in gender-referred individuals reveal high rates of autism traits as well as high rates of existing autism diagnoses. Studies in autistic populations reveal greater gender diversity characteristics. The long-term course of gender diversity in autistic individuals is poorly understood. Clinical guidelines have been developed for adolescents with the co-occurrence, but much work remains: No gender-related measures have been developed and tested for use in neurodiverse populations, no programs exist to support gender-diverse neurodiverse adults, and little is known about co-occurring mental health profiles, risks, or protective factors for people with the co-occurrence. The inclusion of this chapter on co-occurring autism and gender diversity within a book on “co-occurring psychiatric conditions” is problematic, because gender diversity is not a “psychiatric condition,” but instead a form of human diversity. The diagnosis of Gender Dysphoria is useful only insomuch as it allows individuals to obtain necessary gender-related supports. The authors’ choice to include this chapter in this book reflects a compromise, motivated by the need for educating both autism and gender specialists in this common co-occurrence.

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