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Abstract: Progress in predictive medicine has increased the challenges to navigating complex risk information for patients and healthcare professionals. This contribution investigates how people facing the risk of developing Alzheimer’s dementia perceive risk, what aspects are relevant to their health literacy, and how to promote individual health literacy in predictive medicine. We conducted a qualitative study analyzing narrative interviews, body maps, and sociodemographic data from persons who had undergone early predictive procedures in a memory clinic. We understand the promotion of health literacy as an ethical task in predictive medicine and argue for (1) emphasizing personal resources to promote subjective health literacy, (2) reframing communication and decision-making about disease risk, and (3) teaching skills for value-sensitive, individualized risk communication.

The continuous development of medical implants offers various benefits for persons with chronic conditions but also challenges an individual’s, and the healthcare system’s, ability to deal with technical innovation. Accessing and understanding new information, navigating healthcare, and appraising the role of the implant in body perceptions and everyday life requires health literacy (HL) of those affected as well as an HL-responsive healthcare system. The interconnectedness of these aspects to ethically relevant values such as health, dependence, responsibility and self-determination reinforces the need to address HL in implant care. Following a qualitative approach, we conducted group discussions and a diary study among wearers of a cochlear, glaucoma or cardiovascular implant (or their parents). Data were analysed using the documentary method and grounded theory. The data reveal the perceptions of implant wearers regarding the implant on (1) the ability to handle technical and ambiguous information; (2) dependence and responsibility within the healthcare system; and (3) the ethical aspects of HL. Knowing more about the experiences and values of implant wearers is highly beneficial to develop HL from an ethical perspective. Respective interventions need to initially address ethically relevant values in counselling processes and implant care.

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.

Being confronted with health risks implies challenges to mental health and well-being, requiring persons to find a balance between threat and confidence. The ‘power of definition’ with respect to health risks predominantly lies with professionals, implying that there is one appropriate way of understanding and interpreting risk-related information. This chapter will invite for a reflection on the potential of qualitative research in re-claiming the power of definition, offering the opportunity for a co-construction of concepts such as risk, vulnerability, and mental health. The aim is to highlight the particular value of different methodological approaches for opening up definitional spaces between scientists and research participants. It is grounded in the assumption that persons faced with a health risk construct their personal narratives to find a meaningful way to manage their situation, embedded in their biographical and social context. Narrative interviews with persons faced with a mental health risk were analysed in a circular process using complementing methodological perspectives from two disciplines: ethnology and linguistics. The findings were situated within a sociology of knowledge framework, focusing on the power of definition concerning a person’s health and health risks. Herein, particular attention was drawn to ethical and methodological issues of assessing concepts such as ‘risk’ or ‘vulnerability’; and the importance of (self-)reflexivity in conducting research in this field. Methodological reflection on these issues may contribute to constructively dealing with the tension between a standardised biomedical conception and an open, bottom-up approach to health knowledge in a medically oriented scientific environment.

Im Kontext der Entwicklung von und Versorgung mit medizinischen Implantaten gilt es, damit einhergehende ethische Fragestellungen zu berucksichtigen. Die Analyse ethischer Aspekte ist mit einigen Herausforderungen verbunden: Neue Errungenschaften der technischen Entwicklung gehen mit einer hoffnungsvollen und optimistischen Haltung gegenuber verbesserten Losungen fur gesundheitliche Probleme einher; zugleich impliziert der innovative Charakter ein Fehlen von umfassenden Einschatzungsmoglichkeiten und langfristigen Erfahrungswerten zur differenzierten Abwagung von Nutzen und Schaden. Mit den Health Technology Assessments (HTA) wird im Sinne einer Technikfolgenabschatzung angestrebt, eine Analyse und Bewertung innovativer biomedizinischer Technologien vorzunehmen. Diese konzentrieren sich jedoch zumeist auf okonomische Kosten-Nutzen-Analysen sowie Aspekte der Wirksamkeit und Sicherheit, wahrend ethische Aspekte in der Regel unterreprasentiert sind.

Predictive and preventive medicine play an increasingly important role in public debates on health, providing cutting-edge technologies with the potential to measure and predict individual risks of getting ill. This leads to an ever-expanding definitional space between being &ldquo, healthy&rdquo, and being &ldquo, ill&rdquo, challenging the individual&rsquo, s everyday life, attitudes and perceptions towards the self and the process of health-related decision-making. &ldquo, How do the condition of &lsquo, being at risk&rsquo, and individual health literacy interrelate?&rdquo, is the leading question of the current contribution. Drawing on empirical qualitative data, collected by means of narrative interviews with persons at risk in four clinical fields, a bottom-up ethnographic and health sciences perspective on health literacy (with an emphasis on critical health literacy) is employed. The findings will be embedded within theoretical approaches dealing with power relations and communication in healthcare encounters, particularly Habermas&rsquo, theory of communicative action. The core outcome of our study is a concept for an overarching model of health literacy in the context of health-related risk prediction across indications, based on empirical insights gained through interpretative analysis of the four clinical domains.