Ethical Issues: Patients, Providers, and Systems

Abstract

This chapter provides an overview of ethics in biomedicine and healthcare while particularly focusing on the digital environments of care and research. An introduction to the four ethical principles of autonomy, nonmaleficence, beneficence, and justice in biomedicine is presented. Ethical questions referring to digitally supported healthcare are discussed along with three perspectives. The first perspective emphasizes the technology investigating ethical issues raised by big data, artificial intelligence and machine learning, smart assistive technologies, and social media. The second perspective pertains to covering informed consent and the risks regarding privacy and confidentiality for the patients. The third and final perspective refers to the healthcare providers and their relationship with the patients.

Information technology is neither good nor bad. It is the way how it is intended, implemented, and practically technology is neither good nor bad. It is the way how used by people that makes all the difference. Therefore, assessments and evaluation studies of health IT regarding its ethical impact are required.

The case study finally yields an example of what standardized data elements of code status should be implemented in electronic health records in order to improve the current practice of ensuring that the patient’s preferences are respected during their end-of-life situation.

Appendix: Answers to Review Questions

• 1. What is ethics?

  Ethics or moral philosophy is a scientific discipline that studies moral behavior and beliefs. Ethical studies can be broken down into nonnormative ethics and normative ethics.

• 2. What are the major internationally relevant declarations and their scope?

  Declaration of Geneva: Ethical principles of the medical profession

  Code of Ethics for Nurses: Ethical principles of the nursing profession

  Declaration of Helsinki: Medical research involving human subjects

  Belmont Report: Biomedical and behavioral research involving human subjects.

• 3. Please sketch the four ethical principles in biomedicine according to Beauchamp and Childress.

  Autonomy is the capacity to decide and act on your own in accordance with your beliefs and values. Decisions and actions are made intentionally based on a plan with an understanding about the decision and action and are made free from control by external forces or internal conditions that counteract the self-directedness of the person.

  Nonmaleficence means that interventions in medicine and patient care shall not harm the patient. Related activities are often expressed as “do not do a certain action.”

  Beneficence, the complementary principle to nonmaleficence, is defined as all activities benefiting people and contributing to their well-being. It includes the protection of others, the prevention and removal of harm as well as helping and rescuing.

  Justice is understood by many philosophers as “a fair, equitable, and appropriate treatment in light of what is due or owed to affected individuals or groups.” Theories of justice may be classified as utilitarian, egalitarian, libertarian, communitarian in addition to theories specifically related to health.

• 4. Please describe and discuss three ethical challenges of big data analysis and artificial intelligence.

  Ethics of data referring to generating and recording, curing, processing, and disseminating data addresses the challenge to provide unbiased, relevant and meaningful, representative data of high quality that include minorities, are gender-balanced and truthful because they constitute the primary basis for the algorithms.

  Ethics of algorithms embraces the explicability of statistical and all other mathematical, and computer science methods for analyzing the data. These methods should demonstrate how they arrived at their result. Otherwise, clinicians cannot justify the use of these findings toward themselves and decisions based on these findings toward their patients.

  Ethics of practice is related to defining responsibilities and duties, for example, within the framework of professional ethics code ensuring amongst other the respect for privacy and confidentiality. Ethics of practice is also concerned with the balancing of conflicting ethical values.

• 5. Please describe and discuss three ethically relevant goals of smart assistive technologies.

  Smart assistive technologies are designed and developed with the intention to help and support persons with self-care problems often the elderly. Ethically relevant goals referring to ethical principles are autonomy including independence (e.g., smart home technologies for ensuring independent living), beneficence and nonmaleficence intended to enhance the quality of life, establishing well-being, improving self-esteem and protecting the dignity of the users, reducing risk (e.g., increased mobility through intelligent walkers).

• 6. What is informed consent and what problems arise when data are to be reused?

  Informed consent of the data subject means any freely given, specific, and unambiguous indication of the data subject’s wishes that signifies agreement to the processing of personal data relating to him or her. Informed consent rests on information, understanding, and voluntariness. It is related to a single instance and a particular purpose. The problems that arise in the case of secondary use are based on these two requirements because secondary use typically goes beyond that specific purpose and is often connected with multiple analyses.

• 7. Please describe and discuss three cases of threats to privacy and confidentiality due to health IT.

  Ensuring privacy that is closely connected to the anonymization of personal data is jeopardized by the possibility of cross-referencing with other data set and thus reversing the de-identification. It is also challenged when data from different sectors including settings from outside of health care, e. g. from fitness and well-being are linked and thus attain distinction that was not previously extractable. Privacy is also at stake when technologies intrude into the personal and living environment as is often the case with smart assistive technologies when they are monitoring persons via video cameras and or tracking them via GPS. Privacy and confidentiality could be compromised when parents access personal electronic health records of their adolescent children who wished that this information is only retrievable by their provider.

• 8. How are care providers themselves concerned regarding the use of artificial intelligence tools and electronic health records?

  Care providers using intelligent autonomous tools and decision support systems, e.g., for automatic image analysis and lesion detection, are facing the threat that their professional decisions are not independent any longer and that their clinical judgment might be replaced by a machine generated diagnosis.

  Another issue arises when poor electronic workflows and bad usability of electronic health record systems consume much of the clinicians’ time and energy that they experience a feeling of burnout.

• 9. Please illustrate (one example) how the patient–provider relationship can be affected through digital media.

  One example of a misdirected manner of communication between patients and providers is unsolicited data sent to the provider. They are particularly problematic if no prior personal contact had been established. Questions are: What should the provider do with regard to accepting/rejecting this request, checking the identity of the person, ensuring the quality of the data, storing the data, and giving a clinical judgment. What rules should be defined once a personal relationship between the patient and the provider has been established?

• 10. Please briefly describe the dimensions captured in the MEESTAR model and the three time points when assessment and evaluation can take place.

  The ethical dimensions described by the MEESTAR model embrace.

  • Care, in the sense of taking care of someone in need.

  • Autonomy.

  • Safety, in a wide meaning of the term including security and prevention of harm.

  • Justice, here particularly social justice.

  • Privacy, defined as the inviolable zone around a person.

  • Participation, in the meaning of living together with others in a society and opposed to exclusion.

  • Self-conception, meaning the way a person perceives and understands him- or herself.

    They could be captured ex ante, intra, or ex post regarding product or system development and implementation. The dimensions concern evaluations at the level of the individual person, the organization and the society. Such evaluation would require a statement to be made according to the four stages from “harmless” to “has to be opposed.”