Merle Spriggs

Controversies and ethical issues in cancer-genetics clinics

Genetic testing is a powerful technology that enables prediction of future health status. Testing for cancer-predisposition genes provides information for both the individual and his or her family. The use of this information reaches beyond the medical sphere to the psychological, social, legal, and ethical. The important issues include informed consent, autonomy, confidentiality, justice, disclosure and non-disclosure, duty to warn, genetic discrimination, predictive genetic testing of children, preimplantation genetic diagnosis, and patenting of cancer-predisposition genes.

A practical account of autonomy: why genetic counseling is especially well suited to the facilitation of informed autonomous decision making.

In genetic counseling, facilitation of autonomous decision-making is seen as a primary aim and respect for autonomy is used to justify a nondirective counseling approach whereby clients are free to make their own choices after being given all necessary information. However in the genetic counseling literature, autonomy as a concept appears to be interpreted variably and often narrowly. We offer a practical account of autonomy that is coherent, consistent and philosophically defensible for the genetic counseling setting. At the same time we demonstrate how nondirective counseling may serve to frustrate rather than facilitate client autonomy. We suggest that promoting purposeful dialogue rather than counseling that is nondirective is more conducive to client autonomy.In genetic counseling, facilitation of autonomous decision-making is seen as a primary aim and respect for autonomy is used to justify a nondirective counseling approach whereby clients are free to make their own choices after being given all necessary information. However in the genetic counseling literature, autonomy as a concept appears to be interpreted variably and often narrowly. We offer a practical account of autonomy that is coherent, consistent and philosophically defensible for the genetic counseling setting. At the same time we demonstrate how nondirective counseling may serve to frustrate rather than facilitate client autonomy. We suggest that promoting purposeful dialogue rather than counseling that is nondirective is more conducive to client autonomy.

How will information about the genetic risk of mental disorders impact on stigma

Objectives: To suggest ways of testing hypotheses about the impact that information on genetic risk may have on the social stigma of mental disorders and to analyse the implications of these hypotheses for genetic screening for mental disorders. Method: Literature review and critical analysis and synthesis. Results: An optimistic view is that information on the genetic risk for mental disorders will reduce blame and social stigma experienced by individuals living with mental disorder. A more pessimists view is that genetic risk information and the use of predictive genetic testing will lead to earlier stigmatization of those at risk of mental disorders. Research is identified that is needed to provide a better understanding of the implications of predictive genetic testing for the stigmatization of different mental health disorders. Conclusions: It is essential that research on the genetics of mental disorders is accompanied by social science research on the ways in which genetic findings influence the lives of those who are tested.

The ethics of paediatric research

Paediatric research is essential for improving health outcomes of children. Waiting for adult studies before conducting paediatric studies will prolong the denial of effective treatment for children. If we rely on information from adult studies rather than conducting studies with children, we risk causing harm to children. In this paper, we identify and examine ethical issues unique to conducting research with children. These include the function and the value of a childs assent and the criteria that should guide a proxy in making decisions about a childs involvement in research, offering payment to children for research participation and acceptable levels of risk for paediatric research. Justice demands that children not be denied the benefits of research, and it is the role of the paediatric medical community to advocate not only for more research for children but also to ensure that the research conducted is of the highest quality.

Clinical, ethical and legal considerations in the treatment of newborns with non-ketotic hyperglycinaemia.

Non-ketotic hyperglycinaemia (NKH) is a devastating neurometabolic disorder leading, in its classical form, to early death or severe disability and poor quality of life in survivors. Affected neonates may need ventilatory support during a short period of respiratory depression. The transient dependence on ventilation dictates urgency in decision-making regarding withdrawal of therapy. The occurrence of patients with apparent transient forms of the disease, albeit rare, adds uncertainty to the prediction of clinical outcome and dictates that the current practice of withholding or withdrawing therapy in these neonates be reviewed. Both bioethics and law take the view that treatment decisions should be based on the best interests of the patient. The medical-ethics approach is based on the principles of non-maleficence, beneficence, autonomy and justice. The law relating to withholding or withdrawing life-sustaining treatment is complex and varies between jurisdictions. Physicians treating newborns with NKH need to provide families with accurate and complete information regarding the disease and the relative probability of possible outcomes of the neonatal presentation and to explore the extent to which family members are willing to take part in the decision making process. Cultural and religious attitudes, which may potentially clash with bioethical and juridical principles, need to be considered.

Ethical questions must be considered for electronic health records

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health record system. In this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing.

Should HIV discordant couples have access to assisted reproductive technologies

In this paper we identify and evaluate arguments for and against offering assisted reproductive technologies (ART), specifically IVF, to HIV discordant couples (male partner HIV positive, female partner HIV negative). The idea of offering ART to HIV discordant couples generates concerns about safety and public health and raises questions such as: what is an acceptable level of risk to offspring and should couples who want this assistance be subject to selection criteria; should they undergo scrutiny about their suitability as parents when those who are able to conceive naturally face no such scrutiny and people with other illnesses are given access to ART? We conclude that offering ART to HIV discordant couples is likely to produce more benefit than harm and violates no ethical principles. Nevertheless, a decision to deny treatment need not constitute unjustified discrimination.

Hypoxic air machines: performance enhancement through effective training—or cheating?

Following an investigation of the football clubs using hypoxic air machines, the Australian Football League (AFL) has decided not to ban the machines. This seems, however, to be a reluctant decision since it appears that some AFL officials still feel there is something undesirable about the use of the machines. Use of the machines raises questions about performance enhancement and the role of technology. It prompts consideration of the grounds for banning performance enhancing devices or substances and raises questions about what constitutes a drug A machine being used by Australian footballers, which is designed to imitate the effects of high altitude training and enhance performance has prompted an investigation by the Australian Football League (AFL) and sparked debate in the media. The AFL decided not to ban the machine but a sense of unease about its use remains and there seems to be some difficulty in articulating the cause of that unease. The league’s medical officers say the hypoxicators do not contravene their antidoping code or the league’s rules,1,2 but according to at least one AFL official, the use of the machines is “sending the wrong message …

Consent in cyberspace: Internet-based research involving young people

Social networking sites such as MySpace and virtual communities such as on-line support groups can be a rich source of data for researchers. These sites can be an effective way of reaching and researching young people in order to address their particular health needs. Internet-based research is also potentially risky and exploitative. There is some guidance for conducting research online, but there are no detailed or universally accepted ethics guidelines for research of webspaces such as MySpace or virtual communities in which young people participate. One question that arises is — If MySpace is a public webspace, can research be done without consent? In this paper I investigate ethical issues surrounding young people’s consent in cyber research. I identify issues that help determine whether consent is needed, offer suggestions for dealing with consent in cyberspace and add my voice to the call for a resource of case studies — indispensible in the development of guidelines and the education of researchers and research ethics committees.

The Unique Nature of Clinical Ethics in Allied Health Pediatrics: Implications for Ethics Education

Ethics education is recognized as an integral component of health professionals’ education and has been occurring in various guises in the curricula of health professional training in many countries since at least the 1970s. However, there are a number of different aims and approaches adopted by individual educators, programs, and, importantly, different health professions that may be characterized according to strands or trends in ethics education.