Phillipa Malpas

Predictive genetic testing of children for adult-onset diseases and psychological harm

One of the central arguments given to resist testing currently healthy, asymptomatic children for adult-onset diseases is that they may be psychologically harmed by the knowledge gained from such tests. In this discussion I examine two of the most serious arguments: children who are tested may face limited futures, and that testing may result in damage to the child’s self esteem (where the test result returns a positive diagnosis). I claim that these arguments do not stand up to critical evaluation. In conclusion, whilst I do not suggest that all at-risk children should be tested for adult-onset diseases we ought to listen carefully to some parental requests for such testing because the putative psychological harms may not be as significant or likely as initially thought. This is because parents generally have the best interests of their children at heart and if they are properly supported and educated about predictive genetic testing and the possible consequences, then the risk of psychological harms occurring may be ameliorated.

Why tell asymptomatic children of the risk of an adult-onset disease in the family but not test them for it?

This paper first considers why it is important to give children genetic information about hereditary conditions in the family, which will go on to affect their lives in a salient way. If it is important to inform children that they are at risk for an adult-onset disease that exists in the family, why should they not also grow up knowing whether they actually carry the genetic mutation? Central to this discussion is the importance of the process of disclosure and the environment in which genetic information is divulged. It is concluded that the reasons given for defending disclosure of genetic conditions in the family to children are also important reasons to cautiously defend predictive genetic testing of children for adult-onset diseases.

Academic dishonesty and ethical reasoning: Pharmacy and medical school students in New Zealand

Background: There is ample evidence to suggest that academic dishonesty remains an area of concern and interest for academic and professional bodies. There is also burgeoning research in the area of moral reasoning and its relevance to the teaching of pharmacy and medicine. Aims: To explore the associations between self-reported incidence of academic dishonesty and ethical reasoning in a professional student body. Methods: Responses were elicited from 433 pharmacy and medicine students. A questionnaire eliciting responses about academic dishonesty (copying, cheating, and collusion) and their decisions regarding an ethical dilemma was distributed. Multivariate analysis procedures were conducted. Results: The findings suggested that copying and collusion may be linked to the way students make ethical decisions. Students more likely to suggest unlawful solutions to the ethical dilemma were more likely to disclose engagement in copying information and colluding with other students. Conclusions: These findings imply that students engaging in academic dishonesty may be using different ethical frameworks. Therefore, employing ethical dilemmas would likely create a useful learning framework for identifying students employing dishonest strategies when coping with their studies. Increasing understanding through dialog about engagement in academic honesty will likely construct positive learning outcomes in the university with implications for future practice.

Is genetic information relevantly different from other kinds of non-genetic information in the life insurance context?

Within the medical, legal and bioethical literature, there has been an increasing concern that the information derived from genetic tests may be used to unfairly discriminate against individuals seeking various kinds of insurance; particularly health and life insurance. Consumer groups, the general public and those with genetic conditions have also expressed these concerns, specifically in the context of life insurance. While it is true that all insurance companies may have an interest in the information obtained from genetic tests, life insurers potentially have a very strong incentive to (want to) use genetic information to rate applicants, as individuals generally purchase their own cover and may want to take out very large policies. This paper critically focuses on genetic information in the context of life insurance. We consider whether genetic information differs in any relevant way from other kinds of non-genetic information required by and disclosed to life insurance companies by potential clients. We will argue that genetic information should not be treated any differently from other types of health information already collected from those wishing to purchase life insurance cover.

Why do older people oppose physician-assisted dying? A qualitative study

Background: Physician-assisted dying at the end of life has become a significant issue of public discussion. While legally available in a number of countries and jurisdictions, it remains controversial and illegal in New Zealand. Aim: The study aimed to explore the reasons some healthy older New Zealanders oppose physician-assisted dying in order to inform current debate. Design: Recorded interviews were transcribed and analysed by the authors after some edits had been made by respondents. Setting/participants: In all, 11 older participants (over 65 years) who responded to advertisements placed in Grey Power magazines and a University of Auckland email list were interviewed for around 1 h and asked a number of open-ended questions. Results: Four central themes opposing physician-assisted dying were identified from the interviews: one’s personal experience with health care and dying and death, religious reasoning and beliefs, slippery slope worries and concern about potential abuses if physician-assisted dying were legalised. Conclusions: An important finding of the study suggests that how some older individuals think about physician-assisted dying is strongly influenced by their past experiences of dying and death. While some participants had witnessed good, well-managed dying and death experiences which confirmed for them the view that physician-assisted dying was unnecessary, those who had witnessed poor dying and death experiences opposed physician-assisted dying on the grounds that such practices could come to be abused by others.

Advance directives and older people: ethical challenges in the promotion of advance directives in New Zealand

In New Zealand an advance directive can be either an oral statement or a written document. Such directives give individuals the opportunity to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. All consumers of health care have the right to make an advance directive in accordance with the common law. When we consider New Zealands rapidly ageing population, the fact that more people now live with and die of chronic rather than acute conditions, the importance given to respecting autonomous decision-making, increasing numbers of individuals who require long-term residential care, and financial pressures in the allocation of medical resources, there would seem to be a number of compelling reasons to encourage individuals to write or verbalise an advance directive. Indeed the promotion of advance directives is encouraged. However, caution should be exercised in promoting advance directives to older people, especially in light of several factors: ageist attitudes and stereotypes towards them, challenges in the primary healthcare setting, and the way in which advance directives are currently focused and formulated. This paper considers some of the specific challenges that need to be addressed if the promotion of advance directives are to improve outcomes of patient treatment and care near the end of life.

Reflecting on senior medical students' ethics reports at the University of Auckland

In January 2010, fifth year medical students in the medical programme at the University of Auckland were asked to write a 1200-word report as part of their ethics assessment. The purpose of the report was to get students to reflect critically on the ethical dimension of a clinical case or situation they had been involved in during the past 2 years. Students were required to identify and discuss the salient ethical issues that arose as they saw them, and consider what they had personally learnt from the situation. The purpose of the following discussion is twofold: first, to outline some of the ethical issues raised by year five medical students in their ethics reports; and second, to reflect on what we, as educators and health professionals can learn from their experiences and insights.

Reasons for academic honesty and dishonesty with solutions: a study of pharmacy and medical students in New Zealand

This paper presents students’ views about honest and dishonest actions within the pharmacy and medical learning environments. Students also offered their views on solutions to ameliorating dishonest action. Three research questions were posed in this paper: (1) what reasons would students articulate in reference to engaging in dishonest behaviours? (2) What reasons would students articulate in reference to maintaining high levels of integrity? (3) What strategies would students suggest to decrease engagement in dishonest behaviours and/or promote honest behaviours? The design of the study incorporated an initial descriptive analysis to interpret students’ responses to an 18-item questionnaire about justifications for dishonest action. This was followed by a qualitative analysis of students’ commentaries in reference to why students would engage in either honest or dishonest action. Finally a qualitative analysis was conducted on students’ views regarding solutions to dishonest action. The quantitative results showed that students were more likely to use time management and seriousness justifications for dishonest actions. The qualitative findings found that students’ actions (honest or dishonest) were guided by family and friends, the need to do well, issues of morality and institutional guidelines. Students suggested that dishonest action could be ameliorated by external agencies and polarised views between punitive and rewards-based mechanisms were offered. These results suggest that these students engaged in dishonest action for various reasons and solutions addressing dishonest action need to consider diverse mechanisms that likely extend beyond the educational institution.

“Doctors Shouldn’t Underestimate the Power that they Have”: NZ Doctors on the Care of the Dying Patient:

Rapidly aging populations and increased prevalence of chronic rather than acute illnesses have seen growing public and professional interest in medical decision making at the end of life and greater attention being paid to the factors that influence how individuals make such decisions. This study comprised 2 components: The first, a postal survey, based on the Remmelink questionnaire was sent in May 2013 to 3420 general practitioners (GPs) in New Zealand. Results from this component are reported elsewhere. The second component (reported here) sought information by inviting GPs to ring a free-phone number to be interviewed about their experiences caring for their dying patients. Interviews were recorded then transcribed with identifying information deleted to preserve anonymity. With an aging population, the provision of end-of-life care will increase in general practice. There is no doubt that hospice and specialist palliative care have transformed the quality of care for the dying and their families in New Zealand. However, while respondents in this study seemed realistic about what palliative care can and cannot achieve, patients and their families may have unrealistic expectations of both hospice and palliative medicine. Many GPs appear confused over the legality of the assistance they provide to the terminally ill, concerned that actions such as increasing medication to address refractory symptoms, or stopping food and fluids may put them at risk of legal censure when they foresee that their actions may hasten death.

‘It’s not all just about the dying’. Kaumātua Māori attitudes towards physician aid-in dying: A narrative enquiry

Aim: To explore kaumātua attitudes towards physician aid-in dying, to gain a clear understanding of how such attitudes may influence and shape their expectations of medical care at the end of life and to assist health professionals in Aotearoa/New Zealand to address the healthcare needs of older Māori near the end of life. Design: A kaupapa Māori consistent approach was undertaken. A systematic narrative technique was employed for the qualitative data analysis. Data were triangulated through independent data coding by three researchers (two of whom identified as Māori researchers), to ensure a robust and consistent method of analysis as well as adhering to a kaupapa Māori research approach. Setting/participants: Recruitment of participants was through kaumātua of Te Kupenga Hauora Māori (Māori leadership within the Faculty of Medical and Health Sciences), University of Auckland and local Auckland marae. Focus group or individual interviews (as per their preference) were undertaken with 20 Kaumātua from the Auckland region. Results: Five closely interrelated themes were identified from kaumātua narratives regarding physician aid-in dying. These were (1) attitudes and understandings of physician aid-in dying, (2) influence of power, (3) significance of kawa, (4) whānau relationships and the (5) significance of wairua. Conclusion: The study demonstrated that for these kaumātua, medical practices that hasten death such as physician aid-in dying are ‘not all just about the dying’. Tikanga and kawa are important processes and concepts to understand during death and dying, and whānau are central to such processes being respected by those involved in the dying process. These factors are so closely intertwined that they cannot be considered in separation of each other.