Ethics,policy, and rare genetic disorders: the case of Gaucher disease in Israel

Gaucher disease is a rare, chronic,ethnic-specific genetic disorder affecting Jewsof Eastern European descent. It is extremelyexpensive to treat and presents difficultdilemmas for officials and patients in Israelwhere many patients live. First, high-cost,high-benefit, but low volume treatment forGaucher creates severe allocation dilemmas forpolicy makers. Allocation policies driven bycost effectiveness, age, opportunity or needmake it difficult to justify funding. Processoriented decision making based on terms of faircooperation or decisions invoking the ``rule ofrescue' risk discriminating against minoritieswho may already suffer from inequitabledistribution of heath care resources. Apartfrom cost, Gaucher disease prompts questionsabout abortion. Unlike severe geneticdisorders, Gaucher offers no grounds forabortion and, in many ways, is analogous togender based abortions that are prohibitedregardless of fetal age. Finally, Gaucherraises concerns about the disclosure of geneticinformation. These affect potential carriersasked to participate in population studies andcarriers and patients who must considerdisclosure to others. These concerns weigh theright to privacy against communal interests andbilateral commitments.     

Are Newborns Morally Different from Older Children?

Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests that neonatal care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors.     

When There Is Not Enough to Go Around: How Black People’s Perceptions of Competition for Black Mates Affects Forced Black Identity Ascriptions of Black/White Multiracial People

Using a resource scarcity framework, the current study investigated whether Black people’s perceptions of competition for Black mates related to ascribing a Black identity onto Black/White Multiracial people. Participants took online questionnaires that assessed competition for Black mates, likelihood of forcing a Black identity onto a self-identified Black/White Multiracial person, essentialism, and contact with Multiracial people. Results indicated that increased perceptions of competition for Black mates was related to increased forced Black identity onto self-identified Black/White Multiracial people, above and beyond levels of essentialism and contact. This relationship was stronger for sexual minorities. The current research supports the proposition that scarcity of resources (i.e., mates) affects ideologies regarding Black/White Multiracial people’s identities.     

Professional commitment: Does it buffer or intensify job demands?

The purpose of this study is to investigate whether professional commitment can be seen as a moderator in the relationship between job demands and emotional exhaustion among Norwegian nurses. Inspired by the job demands‐resources model, this study explores whether having a strong commitment to the nursing profession can be seen as a resource that buffers the effect of job demands on emotional exhaustion or, conversely, intensifies the impact of job demands. A survey that comprised Norwegian nurses who had graduated three years previously (N = 388) was conducted. Multiple regression was performed to test the hypothesis. The results provide support to a buffering effect; thus, individuals with a higher degree of professional commitment conveyed a weaker association between job demands and emotional exhaustion compared with nurses with a lower degree of commitment. Developing a better understanding of the potential buffering effect of professional commitment is of great interest. The present study is the first to utilize professional commitment as a resource within the job demands‐resources framework.