[06.12] Research Ethics in the Digital Age V2.pdf

Digital health

What technological advancement allows for improved communication and remote health and social care services?

Hospital information systems, Electronic health records, Electronic prescriptions, Electronic referral forms, Personal digital assistance, Wearable devices, Telemedicine, and Telemonitoring

What are eight applications or technologies of digital health mentioned in the source?

Facilitate storage, transmission, and retrieval of data

What is one core function of digital health technologies?

Improve communication

What is one function of digital health technologies related to information exchange?

Monitor biological and physiological parameters

What function of digital health is related to tracking bodily metrics?

Provide remote health and social care services

What function of digital health relates to distance care delivery?

Ensure privacy, security, or confidentiality of these data gathered through machine learning

What is one ethical question raised by the transition to AI in healthcare?

Ensure accountability and liability during the physician or patient encounter when machines replace healthcare practitioners

What ethical question arises when machines replace healthcare practitioners in patient encounters?

Consider some of the limitations and differences between telemedicine and face-to-face consultations

What specific comparison raises ethical questions when discussing AI interventions?

Consequences if not regulated

What will all digital health interventions have if they are not regulated?

Human Understanding, Social, Institutional, and Economic Efficiency, Predictive Accuracy and Personalization

What are three significant benefits of telehealth and digital health research and practices discussed?

Understanding of complex systems

What does digital health allow, leading to more intelligent action?

A group can be harmed by a drug or technique originally designed for another group

What may digital data reveal about a drug or technique that was originally intended for a different group?

Reduces wasted effort and resources

What benefit of digital data contributes to social, institutional, and economic efficiency?

Helps create models of systems such as waiting times in an outpatient department or an outpatient health care facility

What is an example of how digital data allows for economic, institutional, and social efficiency?

Ability to tailor actions to be effective in achieving good outcomes

What is one component of Predictive Accuracy and Personalization provided by digital health?

What ethical conduct should be expected?

What is one question raised by technology-centered health and social care services?

Designers or developers of digital health technologies, Deployers of digital health technologies, End users (i.e., the patients or participants)

What three groups face challenges arising from digital health and ethical concerns?

What is Right or Wrong?

What is one concept usually considered when thinking about ethics?

A form of risk management that gives some form of a mitigatory approach

How can avoiding negative repercussions be described in relation to ethics?

To ensure good reputation, productivity, gains, and revenue enhancement

What is the purpose of encouraging positive outcomes in ethical considerations?

Consideration of what is right and wrong

What is the definition of ethics provided in the source?

Community/political, personal, and work life levels

To what three levels is ethics applied?

Descriptive Ethics

What branch of ethics focuses on what people view as right and wrong?

Normative Ethics

What branch of ethics is the field of inquiry on norms and how one must conduct oneself, which is practical/applied?

Meta-Ethics

What branch of ethics is a broader, more philosophical field of inquiry on what one needs to know is right, which is theoretical?

Not merely as a regulatory or reactionary function

How must ethics not be viewed in medicine?

A proactive or person-driven function

How must ethics be seen in medicine, where one is driven by a philosophy to do good and encourage positive outcomes?

Beneficence, Non-maleficence, Distributive Justice, Respect for Autonomy

What are the four medical ethics principles that guide practice?

Doing good for persons

What is the definition of Beneficence?

Avoiding conditions of harm for persons

What is the definition of Non-maleficence?

Rationing of healthcare based on the principle of equity

What is the definition of Distributive Justice?

Acknowledgement of a person’s capacity to determine himself (self-determination)

What is the definition of Respect for Autonomy?

Bioethics

What field of study applies ethics to Health, Medicine, Science and Technology?

From the beginning of life to the end of life

What is one application of bioethics related to life stages?

Protection of integrity of participants in researches/clinical trials

What is one application of bioethics related to research?

Speed and pervasiveness of advances that transform our current society

What is one issue arising from ethics, technology, and data?

Inability of regulators to keep up

What is one issue regarding the regulation of technology and data?

Lack of expertise to guide effective technology policy

What is one issue regarding guiding technology policy?

Recognition algorithms (location services on phone)

What example of a technology was given that tracks movements and actions, potentially exposing sensitive data?

Access to the benefits and exposure to the risks are distributed in a rightful manner

What is one question that arises regarding the distribution of benefits and risks of new technologies?

Object/Action, Intention, Circumstance

What are the three criteria used to evaluate the morality of actions in moral philosophy?

Overall goodness

What concept is used to interpret the criteria for morality, relating to the possibility of making a difference to a person's chances of having a good or bad life?

Conditional value

What characteristic means that digital health information can be good or bad in itself when put into different uses?

Morally neutral

How is the object/action of digital health information described in itself?

Sharing of the patient’s digital health information whether intentionally or unintentionally

What example illustrates the implication of one’s choice through the intention of the doer of the action?

Managing healthcare of a patient through sharing digital health information between healthcare professionals

What is an example of the potential for goodness related to sharing patient information?

Information was shared with non-healthcare providers (e.g., leaked to the public)

What is an example of the potential for harm related to sharing patient information?

More than the intentions

What is examined when looking at the circumstances surrounding the possible benefit or harm of an intervention or action?

Can either add or diminish the impact of the ethical benefits or harms to the patient

What effect can circumstances have on the impact of ethical benefits or harms?

Information owned by a celebrity or someone who is of public interest

What example circumstance was given that adds an impact to the overall harm for a patient if information is leaked?

Physiological

What is one fundamental life interest that data practices have the potential to impact?

Harm to Privacy and Security

What is one significant harm of data practices, often due to the absence of knowledge and informed consent?

Harm to Fairness and Justice

What is one significant harm of data practices, often due to avoidable errors and inaccuracies like incorrect collection and processing of data?

Harm to Transparency and Autonomy

What is one significant harm of data practices, which may obliterate how one institution works (e.g., incorrect storage/retrieval of data)?

Fallacy of the Technological Imperative

What common ethical challenge suggests that just because a practice can be done, it does not necessarily mean it must be done?

Researchers in academia, government, the non-profit sector, or commercial industry

What is one example role/context of data practitioners and stakeholders involved in ethical challenges?

How can we properly acknowledge and respect the purpose for and context within which, certain data was shared with us or generated for us?

What question should be asked regarding the ethical challenge of Data Collection?

How can we safely store personal identifying information?

What question should be asked regarding the ethical challenge of Data Storage, Security, and Stewardship?

How long is this data likely to remain accurate, useful, or relevant?

What question should be asked regarding the ethical challenge of Data Hygiene and Relevance?

Have we sufficiently understood how a bias could do harm?

What question should be asked regarding the ethical challenge of Data Bias?

What may arise because of a lack of transparency in data analysis?

What question should be asked regarding the ethical challenge of Data Validation and Testing?

Who will be responsible for each aspect of data practice?

What question should be asked regarding the ethical challenge of Data Accountability?

Are our data users given an accurate view of the limits and proper use of data?

What question should be asked regarding the ethical challenge of Data Use?

Has sufficient input been gathered from other stakeholders who might represent very different interests from ours?

What question should be asked regarding the ethical challenge of Data Practice Impacts (Business, Institutions)?

Ethical clearance

What mitigates potential negative harms before conducting research?

Ensures principles of confidentiality, security, and privacy is respected for our end-participants/users

What is one purpose of ethical clearance regarding end-participants/users?

All human beings have ethical obligations to one another

What is the foundational reason why data practitioners have obligations to the public?

Life and death risks

What is one potential harm that data has the potential to cause the public?

Reputational, economic, physiological harm

What are three types of harm that data has the potential to cause the public?

Reinforce unjust social arrangements

What potential harm related to social structures can data cause?

"Profession" creates a special ethical obligation

Where do professional obligations come from, allowing for an elevated status?

To protect the interest of patients or participants in any kind of health-related research

What is the special ethical obligation of healthcare professionals and practitioners?

The public is everyone

Who is defined as the “Public” in relation to data practitioners?

Consequentialist / Utilitarian Ethics

What ethical framework is based on the principle of “Greatest Good for the Greatest Number”?

Maximization of overall happiness and benefits

What is the goal of utilitarian ethics, even if there are inconsistencies in the operative sense?

Trolley Problem

What classic ethical dilemma is used as an example related to utilitarian ethics?

Sharing photos without consent eventually would still raise ethical concerns or questions because it harms confidentiality

What is the concern raised regarding the utilitarian argument for using patient health information without consent for educational purposes?

Deontological Ethics

What ethical framework is also known as Duty Ethics?

Rules, obligations, or principle-based systems of ethics

What is the basis of deontological ethics?

Following Human Rights, Articles, Written Rules of Conduct

What are three examples of principles followed by deontological ethics?

Digital health guidelines are constantly changing through the years

What is an example of why guidelines are not always present in a fast-paced environment, creating a challenge for deontologists?

Freely post on social media anything health-related if there are no rules of conduct

In the absence of digital health guidelines in a facility, what might a deontologist conclude that anyone can do?

Virtue Ethics

What ethical framework argues that individuals must look into the qualities of morally excellent persons and habits of moderation?

Practical wisdom, acts in moderation, and not the deficiencies and excesses of an action

What three characteristics might a virtue ethicist argue constitute a virtuous person?

Vicente Sotto Hospital “Canister” Scandal (2008)

What real-world example of posting patient practices on social media was used to illustrate virtue ethics?

Natural Law Ethics

What ethical framework is described as underrated and poorly understood?

An action fulfills both an efficient and final cause

What condition must be met for an action to be correct or ethical according to Natural Law Ethics?

It expresses a deprivation of its final cause or final function

What makes something bad or unethical according to Natural Law Ethics?

Quick transmission of data

What is the efficient cause in the example of a smartphone used ethically?

Promoting understanding between two or more individuals

What is the final cause in the example of a smartphone used ethically?

Transmission facilitates a breach in confidential information such as the disclosure of sensitive personal information on the internet

What is the final cause in the example of a smartphone used unethically, making the data practice unethical?

Keep data ethics of paramount interest

What is one best practice for Data Ethics Operationalization, ensuring it is not merely for compliance purposes?

Safely storing identifying information

What is one best practice for Data Ethics Operationalization related to considering human lives and interests?

Foreseeability of risks

What is the operationalization of the best practice "Focus on downstream risks and uses"?

Keeping in mind where the data handled today is going tomorrow, and for what purpose

What is the operationalization of the best practice "Envision the data ecosystem"?

Keeping in mind how the expectations of data subjects may vary from reality when handling sensitive data

What is the operationalization of the best practice "Mind the gap between expectations and reality"?

Collecting only as much data as one needs when it is needed, storing carefully for only as long as it is needed, and purging when no longer needed

What is the operationalization of the best practice "Treat data as a conditional good"?

Problem of many data handlers is a constant challenge to accountability

What challenge is addressed by the best practice "Establish chains of ethical responsibility and accountability"?

Foreseeability of errors

What is the operationalization of the best practice "Practice data disaster planning and crisis response"?