[Personal health data in times of a pandemic-legal and ethical aspects]. / Personenbezogene Gesundheitsdaten in einer Pandemie ­ ethische und rechtliche Aspekte.

In the context of the COVID-19 pandemic, it has repeatedly been argued that the protection of (public) health should at any rate take precedence over data protection. This argument is bold and clear, but it is neither ethically nor legally correct. While the fight against a pandemic can indeed require a more comprehensive access to sensitive health data than usual, it must be ensured that such a measure is only taken to the extent absolutely necessary. Furthermore, the wider context in which the data will be used must also be taken into consideration. This article gives three examples-certificates for members of risk groups, tracking apps and immunity certificates-to discuss some of the ethical and legal considerations to be taken into account. The authors aspire to illustrate that even in a pandemic, the balancing of arguments and the need for a proportionality of measures taken must never be forgotten.

The use of data from electronic health records in times of a pandemic-a legal and ethical assessment.

National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from the perspective of law and medical ethics-on the question whether such state access to data could, under certain circumstances, be disadvantageous to a person's state of health in the long run. This may be the case if the data extracted is not only used for the purpose of informing persons, but serves as a basis for measures taken against the will of the individual concerned. This might be perceived as a "breach of trust" and could result in persons opting out of or not opting into an electronic health record system. Such unintended consequences raise concerns from an ethical and a legal point of view. It follows that, even in times of a pandemic, access to personal data stored in patient-controlled health records should be used as a last resort only. While this contribution deals with the legal framework within the EU, its considerations are transferable to other national electronic health record systems.

Advance Directives as Support of Autonomy for Persons with Dementia? A Pilot Study among Persons with Dementia and Their Informal Caregivers.

BACKGROUND: Advance directives could be an important instrument to support a person's will once he/she is not able to consent anymore - if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives. METHODS: The study was conducted as part of the Bavarian Dementia Survey (BayDem). Data were collected from January 2014 to December 2015 by structured face-to-face interviews. Study participants were persons with dementia and their informal caregivers (n = 74). RESULTS: In total, 66% reported having written an advance directive. Concerning the participants' knowledge about possibilities and limitations of advance directives, a lack of knowledge was noted about the possibility to revoke an advance directive. Furthermore, 70% of informal caregivers and 56% of persons with dementia were not aware of the possibility to include dementia-specific terms in the advance directive. CONCLUSION: It is necessary to optimize structures for public information and education concerning the topic of advance directives for persons with dementia.

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

BACKGROUND: Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care. METHODS AND FINDINGS: To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained. CONCLUSIONS: Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors' Summary.

The full spectrum of ethical issues in dementia care: systematic qualitative review.

BACKGROUND: Integrating ethical issues in dementia-specific training material, clinical guidelines and national strategy plans requires an unbiased awareness of all the relevant ethical issues. AIMS: To determine systematically and transparently the full spectrum of ethical issues in clinical dementia care. METHOD: We conducted a systematic review in Medline (restricted to English and German literature published between 2000 and 2011) and Google books (with no restrictions). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in clinical dementia care. RESULTS: The literature review retrieved 92 references that together mentioned a spectrum of 56 ethical issues in clinical dementia care. The spectrum was structured into seven major categories that consist of first- and second-order categories for ethical issues. CONCLUSIONS: The systematically derived spectrum of ethical issues in clinical dementia care presented in this paper can be used as training material for healthcare professionals, students and the public for raising awareness and understanding of the complexity of ethical issues in dementia care. It can also be used to identify ethical issues that should be addressed in dementia-specific training programmes, national strategy plans and clinical practice guidelines. Further research should evaluate whether this new genre of systematic reviews can be applied to the identification of ethical issues in other cognitive and somatic diseases. Also, the practical challenges in addressing ethical issues in training material, guidelines and policies need to be evaluated.