Constructing authentic decisions: proxy decision making for research involving adults who lack capacity to consent

Research involving adults who lack capacity to consent relies on proxy (or surrogate) decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in order to develop an understanding of the ethical concepts involved, and the interactions between those concepts. Proxies described a complex process of respecting the wishes and preferences of the person they represented, whist integrating preferences with what they viewed as being in the interests of the person. They aimed to make a decision that was ‘best’ for the person and protected them from harm; they also aimed to make the ‘right’ decision, viewed as being authentic to the person’s values and life. Decisions were underpinned by the relationship between the person and their proxy, in which both trust and trustworthiness were key. Proxies’ decisions, based both on respect for the person and the need to protect their interests, arose out of their dual role as both proxy and carer. The findings raise questions about accounts which rely on existing normative assumptions with a focus on accuracy and discrepancy, and which fail to take account of the requirement for proxies to make authentic decisions that arise out of their caring obligations.

Profit for Friends, Fairness for Strangers: Social Distance Reverses the Endowment Effect in Proxy Decision Making

Buyers often price a product lower than sellers do, a pricing discrepancy known as the endowment effect. We investigated the way buyers and sellers change their pricing decisions as a function of social distance when making decisions on behalf of another person. In Study 1, the pricing discrepancy persisted when making a decision for a close social contact whereas the pattern was reversed when making a decision for a distant social contact. Study 2 replicated this reversed pattern using a social proximity manipulation, and this effect was mediated by participants’ prioritizing of fairness over immediate profit of the transaction. The current work suggests that people allocate different value to objects depending on the subjective closeness towards another for whom they make the pricing decision.

‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

Background Research into dementia and other conditions connected with cognitive impairments is essential but conducting research with populations who lack capacity to provide consent involves a number of ethical, legal and practical challenges. In England and Wales, family members can act as a consultee or legal representative on behalf of someone who lacks capacity. However, there is a paucity of research about how family members make decisions concerning research participation. Objective To explore family members’ experiences of proxy decision-making for research. Understanding how proxy decisions are made could lead to interventions to support greater inclusion of individuals in research who have impaired decision-making capacity. Methods Semi-structured interviews were conducted with a purposive sample of 17 family members who had experience as a proxy for making decisions about participation in research, including those who had agreed to participation and those who declined. Thematic analysis was used to examine experiences and generate findings for research practice and to develop future supportive interventions. Results Proxy decision-making is highly contextualised. Proxies balance a number of factors when deciding about research participation, including the person’s values and preferences, within the specific context of the study, and the practicalities of being involved. Proxies use these factors to construct a decision that is authentic to the person they care for. Conclusions Proxy decision-making for research is a complex process with inter-woven layers of decision-making. Decisions can be problematic for some proxies who may benefit from decision support to make an informed decision about research participation on behalf of a family member.

More Useful to You: Overestimating Products’ Usefulness to Others Because Of Self-Serving Materialism Attributions

People often try to estimate other people’s preference. When we are deciding a purchase for others, trying to set a price, negotiating, or choosing a gift, we may ask ourselves how useful an item is going to be for someone else. Eight experiments (total n = 4354) show that people believe others would find the same products more useful than they themselves would. Using both mediation analysis and causal chain designs, the authors show that overestimating usefulness to others is caused by a self-serving bias in perceived materialism. Further, the effect is muted for less materialistic purchases. The authors discuss theoretical implications for self-other biases and materialism, as well as practical implications for pricing, negotiation, proxy decision-making, and gift-giving.

The Effect of Option Framing in Self-Other Decision Making

Option framing can be divided into additive and subtractive framing. In additive framing, individuals are asked to add desired options to a base model, i. e., to a core product which does not include any extras, whereas in subtractive framing, individuals are asked to deselect undesired options from a fully loaded model, i. e., a product that does already include all possible extras (Biswas and Grau 2008; Park et al. 2000). In additive framing, individuals must take action if they want to choose the option, e. g., by checking a box in an online configuration. In subtractive framing, individuals find preselected options, and they receive a preselected option unless they actively decide against it, e. g., by unchecking a box in an online configuration (Brown and Krishna 2004; Park et al. 2000). While option framing has received considerable attention with regard to decision making for the self (e. g., Biswas and Grau 2008; Herrmann et al. 2013; Levin et al. 2002; Park et al. 2000; Park and Kim 2012), no researchers have focused on option framing in self-other decision-making contexts. The aim of this paper is to examine the influence of option framing on decision making either for oneself or on behalf of another person. In two studies, we investigate choice behaviour for oneself or on behalf of someone else, namely ones mother, when either one option (Study 1) or more options (Study 2) are presented in additive and subtractive framing. The effect of option framing on decision making for a family member is a relevant question for firms and policy makers since it helps to clarify how an individual’s benefits and expenditures can be influenced by the way a choice is presented when deciding for someone else. In accordance with previous studies (e. g., Biswas and Grau 2008; Levin et al. 2002; Park and Kim 2012), we found the option framing effect when individuals decided on insurances for themselves; i. e., individuals were more likely to choose an option in subtractive framing than in additive framing. When individuals were asked to decide on behalf of their mother, we could not prove an option framing effect when a single option was considered (Study 1). When several options were available (Study 2), the option framing effect emerged; decision makers chose more options for their mother in subtractive framing than in additive framing. We believe that having the opportunity to vary the number of options is the underlying reason. In both studies, individuals deciding on behalf of their mother had a greater tendency to add an option in additive framing than did those deciding for themselves. The greater likelihood of choosing an option in additive framing when deciding for the mother corresponds to our assumption, derived from social values analysis, that decision makers engage in risk-minimizing behaviour as the socially preferred behaviour for proxy decision making. In both studies, no choice differences could be found for subtractive framing. Accepting the insurance option and the number of accepted insurance options remained stable when individuals decided for themselves or for their mother. We assume that for both framing, individuals who decided for their mother acted according to social values and therefore were likely to choose protection for their mother. Moreover, there might be a kind of ceiling effect for insurance decisions because some individuals either may not expect an insurance event to occur for themselves or their mother or may have a general aversion to insurance. Our results add to a growing body of evidence that decision making for others is more dependent on social norms than is decision making for oneself.