Katrina Karkazis

Out of Bounds? A Critique of the New Policies on Hyperandrogenism in Elite Female Athletes

In May 2011, more than a decade after the International Association of Athletics Federations (IAAF) and the International Olympic Committee (IOC) abandoned sex testing, they devised new policies in response to the IAAFs treatment of Caster Semenya, the South African runner whose sex was challenged because of her spectacular win and powerful physique that fueled an international frenzy questioning her sex and legitimacy to compete as female. These policies claim that atypically high levels of endogenous testosterone in women (caused by various medical conditions) create an unfair advantage and must be regulated. Against the backdrop of Semenyas case and the scientific and historical complexity of “gender verification” in elite sports, we question the new policies on three grounds: (1) the underlying scientific assumptions; (2) the policymaking process; and (3) the potential to achieve fairness for female athletes. We find the policies in each of these domains significantly flawed and therefore argue they should be withdrawn.

Nicotine addiction through a neurogenomic prism: ethics, public health, and smoking.

Studies are under way to examine the neurogenetic factors contributing to smoking behaviors. The combined approaches of genomics, molecular biology, neuroscience, and pharmacology are expected to fuel developments in pharmacogenetics, to create new genetic tests, and ultimately to provide the basis for innovative strategies for smoking cessation and prevention. The emergence of a neurogenomic understanding of nicotine addiction is likely to induce fundamental changes in popular, clinical, and public health views of smoking, which could significantly shape existing practices and policies to reduce tobacco use. Still a nascent area of research, nicotine addiction provides an excellent case study through which to anticipate key ethical and policy issues in both behavioral genetics and the neurogenomics of addictive behaviors.

Genital surgery for disorders of sex development: implementing a shared decision-making approach.

ABSTRACT Ongoing controversy surrounds early genital surgery for children with disorders of sex development, making decisions about these procedures extraordinarily complex. Professional organizations have encouraged healthcare providers to adopt shared decision-making due to its broad potential to improve the decision-making process, perhaps most so when data are lacking, when there is no clear “best-choice” treatment, when decisions involve more than one choice, where each choice has both advantages and disadvantages, and where the ranking of options depends heavily on the decision-makers values. We present a 6-step model for shared decision-making in decisions about genital surgery for disorders of sex development: 1) Set the stage and develop an appropriate team; 2) Establish preferences for information and roles in decision-making; 3) Perceive and address emotions; 4) Define concerns and values; 5) Identify options and present evidence; and 6) Share responsibility for making a decision. As long as controversy persists regarding surgery for DSD, an SDM process can facilitate the increased sharing of relevant information essential for making important health care decisions.

Quality of communication in interpreted versus noninterpreted PICU family meetings.

Objectives:To describe the quality of physician-family communication during interpreted and noninterpreted family meetings in the PICU. Design:Prospective, exploratory, descriptive observational study of noninterpreted English family meetings and interpreted Spanish family meetings in the pediatric intensive care setting. Setting:A single, university-based, tertiary children’s hospital. Subjects:Participants in PICU family meetings, including medical staff, family members, ancillary staff, and interpreters. Interventions:Thirty family meetings (21 English and nine Spanish) were audio-recorded, transcribed, de-identified, and analyzed using the qualitative method of directed content analysis. Measurements and Main Results:Quality of communication was analyzed in three ways: 1) presence of elements of shared decision-making, 2) balance between physician and family speech, and 3) complexity of physician speech. Of the 11 elements of shared decision-making, only four occurred in more than half of English meetings, and only three occurred in more than half of Spanish meetings. Physicians spoke for a mean of 20.7 minutes, while families spoke for 9.3 minutes during English meetings. During Spanish meetings, physicians spoke for a mean of 14.9 minutes versus just 3.7 minutes of family speech. Physician speech complexity received a mean grade level score of 8.2 in English meetings compared to 7.2 in Spanish meetings. Conclusions:The quality of physician-family communication during PICU family meetings is poor overall. Interpreted meetings had poorer communication quality as evidenced by fewer elements of shared decision-making and greater imbalance between physician and family speech. However, physician speech may be less complex during interpreted meetings. Our data suggest that physicians can improve communication in both interpreted and noninterpreted family meetings by increasing the use of elements of shared decision-making, improving the balance between physician and family speech, and decreasing the complexity of physician speech.

Sex, health, and athletes

Recent policy introduced by the International Olympic Committee to regulate hyperandrogenism in female athletes could lead to unnecessary treatment and may be unethical, argue Rebecca Jordan-Young, Peter Sönksen, and Katrina Karkazis

Emotionally and cognitively informed consent for clinical care for differences of sex development

Clinicians who utilise recommended best practices for informed consent may be surprised that families in support groups frequently report that some physicians continue to recommend certain irreversible treatments for children with differences of sex development (DSD) without adequate psychosocial support for cognitive processing of information necessary to decision-making. Such practice is contrary to recommendations in the 2006 Consensus Statement on Management of Intersex Disorders. When psychological preparation is lacking for aspects of DSD such as uncertainty about future gender identity, a false sense of urgency can propel parents to agree to genital surgery or removal of gonads without adequate understanding of the long-term consequences in adulthood. If physicians are uncomfortable discussing gender and sexual issues, they may not explore the feasibility of, or offer support for, alternative approaches towards sex atypicality. Families may draw unrealistic conclusions regarding the extent to which such interventions will relieve their distress and improve quality of life for the child and family. Failing to offer adequate psychosocial support to parents making irreversible decisions about DSD can raise significant ethical and legal concerns. Families may experience regret and anger when they make decisions on the basis of limited or even biased information while in an emotionally vulnerable state. Children’s autonomy is violated when they are completely excluded from decision-making. We propose adoption of a holistic approach to emotionally and cognitively informed consent in this setting, with inclusion of psychosocial and peer support from the earliest stages.

Tracking U.S. Professional Athletes: The Ethics of Biometric Technologies

Professional sport in the United States has widely adopted biometric technologies, dramatically expanding the monitoring of players’ biodata. These technologies have the potential to prevent injuries, improve performance, and extend athletes’ careers; they also risk compromising players’ privacy and autonomy, the confidentiality of their data, and their careers. The use of these technologies in professional sport and the consumer sector remains largely unregulated and unexamined. We seek to provide guidance for their adoption by examining five areas of concern: (1) validity and interpretation of data; (2) increased surveillance and threats to privacy; (3) risks to confidentiality and concerns regarding data security; (4) conflicts of interest; and (5) coercion. Our analysis uses professional sport as a case study; however, these concerns extend to other domains where their use is expanding, including the consumer sector, collegiate and high school sport, the military, and commercial sectors where monitoring employees is viewed as useful for safety or to maximize labor potential.

A content analysis of posthumous sperm procurement protocols with considerations for developing an institutional policy

OBJECTIVE To identify and analyze existing posthumous sperm procurement (PSP) protocols in order to outline central themes for institutions to consider when developing future policies. DESIGN Qualitative content analysis. SETTING Large academic institutions across the United States. PATIENT(S) N/A INTERVENTION(S) We performed a literature search and contacted 40 institutions to obtain nine full PSP protocols. We then performed a content analysis on these policies to identify major themes and factors to consider when developing a PSP protocol. MAIN OUTCOME MEASURE(S) Presence of a PSP policy. RESULT(S) We identified six components of a thorough PSP protocol: Standard of Evidence, Terms of Eligibility, Sperm Designee, Restrictions on Use in Reproduction, Logistics, and Contraindications. We also identified two different approaches to policy structure. In the Limited Role approach, institutions have stricter consent requirements and limit their involvement to the time of procurement. In the Family-Centered approach, substituted judgment is permitted but a mandatory wait period is enforced before sperm use in reproduction. CONCLUSION(S) Institutions seeking to implement a PSP protocol will benefit from considering the six major building blocks of a thorough protocol and where they would like to fall on the spectrum from a Limited Role to a Family-Centered approach.

The Harrison Bergeron olympics.

We appreciate Bermon and colleagues’ (2013) engagement with our critical reflection on the new hyperandrogenism policies from the International Association of Athletics Federations (IAAF) and the International Olympic Committee (IOC) (Karkazis et al. 2012) and thank them for characterizing it as “exceptionally thoughtful and thorough.” In the spirit of continued dialogue, we would observe that the authors’ response to our analysis repeats the case presented in the policies themselves, yet includes neither new argumentation nor new evidence. We have already addressed our concern that the new policies incorrectly boil the issue of “advantage” down to testosterone levels alone, so we do not elaborate that point here. Instead, we have limited our response to two areas: (1) the absence of evidence to support such policies; and (2) the questionable assertion of benevolence regarding athletes’ health.

Debating a testosterone “sex gap”

Policies unfairly exclude some women athletes from competition Sexual dimorphism of testosterone (T) in elite athletes was at the center of a recent case at the “Supreme Court of Sport,” the Court of Arbitration for Sport in Switzerland, after teenage Indian sprinter Dutee Chand challenged a sports policy regulating competition eligibility of women with naturally high T. The idea of a “sex gap” in T is a cornerstone of this policy (1). Policymakers infer that mens higher T is the “one factor [that] makes a decisive difference” between mens and womens athletic performances (2)—so that women with naturally high T may unfairly enjoy a “massive androgenic advantage” over other women athletes (2). We report on an emerging scientific debate about whether the sex gap in T applies to elite athletes.