‘Respect for persons’ is more than simply a focus on autonomy, consent and protection of the individual’s interests. In today’s world, it means direct stakeholder involvement in system planning and decision making. As the New Zealand case study has demonstrated, in the context of newborn screening, it should also mean factoring in the family’s interests into the criteria outlined in policy documents. Examples of the application of such criteria to related areas that we are familiar with include: genetic services staff debating the genetic testing of siblings and an HGSA ethics committee considering policies on the genetic testing of minors.
Observation of the processes and reading literature on the topic suggest that for some involved in screening policy and practice, the criteria they work to can sometimes become an end in themselves. In contrast to the criticism often leveled at families, that they are too emotional or subjective in their approach to such issues, some policy makers may be, ironically, too “close” to the administrative and economic issues at hand and the “formula” that often evolves from the criteria to be sufficiently objective. Furthermore, they may also be too far removed from the immediacy of the family and patient experience to be sufficiently subjective, and thus empathetic, in their decision making. With no experience of living on a day-to-day basis with the disorders under consideration, or even unfamiliarity with them, policy officials may lack insight into the implications of their actions for the affected families.
A better blend of decision-making interests that closely involves patient/family interests is required. In New Zealand, such a principle is well supported by provisions in the Public Health and Disability Act 2000, including S3(c) providing for a community voice, and S22 (1), (g), (h) and (i) with their emphasis on social responsibility, community engagement and ethical standards. But the question remains as to how these ethical implications should be factored into decision making.
In response to this question, we propose a pragmatic ethic for consideration, with action in the face of uncertainty or in the face of questionable cost-effectiveness. That is, when knowledge of biological causes and the technical capacity to intervene intersect, professionals and administrators within the health system are faced with an emerging duty to act, and the implicated families/patients have an emerging right to services within the health system. While these duties and rights may not always be absolute, or legally enforceable due to the constraints of competing health demands and limited resources, there is, arguably, still an ethical responsibility for the health system to respond in a timely, considered manner to patient and family needs.
We propose that both the right and the duty are elevated by the seriousness and urgency associated with particular disease groups. Thus, in the context of screening, priority should be given to appropriate assessments of the potential and suitability of a disease, as opposed to the ongoing delays that seem to characterize many potential screening situations. The three-part framework of Bernheim et al. (2007
) would seem very apt for this situation.
In the New Zealand context, one such example of an intervention of rights and duty in a policy decision was the Health & Disability Commissioner’s ruling on antenatal HIV screening that occurred in June 2005. The National Health committee considered the case for an antenatal screening programme for HIV and recommended against such a step, but a complaint to the Health and Disability Commissioner resulted in his review of the rights of patients under the Health and Disability Consumers Code of Rights, and concluding:
“Given the state of knowledge about HIV infection and the availability of treatment to prevent perinatal transmission, in my view, women receiving antenatal care in New Zealand in 1999 were entitled to a comprehensive pregnancy risk assessment that included assessment of the risk of HIV infection” (Health and Disability Commissioner 2005
The comments from the Commissioner relate to a particular set of circumstances, but they may well be as applicable to newborn metabolic screening as they are to antenatal screening. Indeed, they could hold particular significance for many potential screening initiatives around the antenatal and newborn period, as well as those recently implemented, including newborn hearing, antenatal fetal aneuploidy, antenatal HIV and expanded newborn metabolic screening. Most of those were very slow to reach implementation, and it appears that whilst there was a significant level of data and evidence to support their application, in practice, bureaucratic malaise was the major impediment to the start of these programmes.