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Exploring Ethical Issues Related to Emerging Technology in Health Care

CAROL JORGENSEN HUSTON

LEARNING OBJECTIVES AND OUTCOMES

As an RN you most likely have been able to see how technology is dramatically changing the world around us and this is especially evident in health care settings. Electronic health care records, smart devices, robotics, clinical decision support, and genetics are just a few of the technologies changing the health care landscape. In fact, one could argue that nothing has changed or will change the way nursing is practiced more than advances in technology. Indeed, the current rate of technology development and implementation is staggering. Andersen and Rasmussen (2015) suggest that society is transformed whenever new technologies emerge that change our means of production and ability to communicate and that the rapid technological development of the past century—in biotechnology, information technology, nanotechnology, and artificial intelligence—holds promise to do the same for our current, postindustrial world. As all of this occurs, it is good to reflect upon the statement made by Elvin Charles Stakman (1949): “Science cannot stop while ethics catches up. . . . And nobody should expect scientists to do all the thinking for the country.”

CASE SCENARIO

It is disconcerting that in many cases, technology mania has occurred without the much needed, prior critical analysis of the ethical questions surrounding its development and use. Certainly the old adage “If we build it, they will come” is at least somewhat true when discussing technology advances in health care. One must at least question whether some new technologies should be built at all, who should come, and what the unintended consequences might be once these technologies are created.

Pickersgill (2013) agrees, suggesting that as new health technologies are introduced, transformations in the meanings of care occur. For example, as patients gain new choices in care options as a result of emerging technologies, new questions arise as to how to mandate and monitor “good care.” Thus, care becomes more mutable and context-specific; furthermore, risk increases that “good” care may entail practices of coercion. Gabr (n.d.) concurs, suggesting that vigilance systems are needed to ensure that rapid advances in science and technology will not result in uncontrollable evolution or unacceptable deviation or harm.

Table 11.1

Four Leadership Challenges Nurses Face in Integrating Technology and Health Care

Questions to Consider Before Reading On

Returning to the Case Scenario, Julie asks you to help her think through what decision she could make and asks you what other issues she should consider.

1.   Can Julie make a decision that is truly unencumbered by the wishes of others?

2.   Can Julie actually “control” confidentiality in this case?

3.   Can Julie protect her “right to know her genetic data” and also protect her daughter’s “right not to know”?

This chapter addresses some of the ethical considerations associated with emerging technologies in health care including how the basic ethical principles of dignity and autonomy are challenged by technology; the need to balance technology and the human element; the difficulty in weighing the costs and benefits of technology in health care; the challenges inherent in ensuring ongoing technological competence in the workforce; and the ongoing struggle by to ensure that technology use is ethical (Table 11.1). In addition, the chapter suggests strategies nurses might use to lessen the potential ethical dissonance between increasingly technologically driven practice and ethical practice.

DIGNITY AND AUTONOMY

A problem noted by Daniel Dennett (“Ethical Quotes,” 2001–2015) was “that no ethical system has ever achieved consensus. Ethical systems are completely unlike mathematics or science. This is a source of concern.” Multiple ethical principles are relevant when looking at the potential impacts of emerging technology: justice, autonomy, fidelity, paternalism, fairness, beneficence, confidentiality, dignity, autonomy, and agency, to name just a few. Given space constraints, however, only two are discussed in this chapter: dignity and autonomy.

Question to Consider Before Reading On

1.   Do new discoveries related to human enhancement pose ethical threats to human dignity or are they supported by beneficence?

Dignity

Merriam-Webster defines dignity simply as “the quality or state of being worthy, honored, or esteemed” (“Dignity,” 2016). The International Federation of Social Workers (2012), however, suggests a greater complexity to the definition of dignity, noting that dignity entails respecting the right to self-determination, promoting the right to participation, treating each person as a whole, and identifying and developing strengths in others.

The right to self-determination is discussed with autonomy in this chapter. It is the subdefinition of “treating each person as a whole” that may be most threatened by emerging health care technologies since technology-enhanced diagnosis and treatment are frequently directed at specific body parts rather than a more holistic approach.

For example, Chan (2015) suggests that dignity may be threatened by technology advances such as genetics since genetic research tends to reduce individuals to their genetic endowment. Wadhwa (2014) agrees, noting that, while access to and use of genetic information may promote better diagnosis and treatment, such information can also be used to restrict an individual’s freedoms and right to participation by care as a sole result of his or her genetic structure. For example, Wadhwa notes that the Genetic Information Nondiscrimination Act of 2008 prohibits the use of genetic information in health insurance and employment, but provides no protection from discrimination in long-term care, disability, and life insurance. And, it places few limits on commercial use. There are no laws to stop companies from using aggregated genomic data in the same way that lending companies and employers use social-media data, or to prevent marketers from targeting ads at people with genetic defects.

Similarly, the John J. Reilly Center (2015a) suggests that new discoveries related to human enhancements pose ethical dilemmas to dignity since magnifying some aspect of human biological function beyond the social norms violates the treatment of the individual as a whole. It also results in physical risk and creates an unlevel playing field (some individuals are artificially enhanced). For example, drugs designed to treat attention deficit hyperactivity disorder can also be used to enhance the alertness and cognition of those without the disorder. While using performance-enhancing drugs such as stimulants, blood-boosters, and synthetic growth hormone is generally considered unethical by bodies that govern academics and athletics since they violate expectations of fairness and equity, the John J. Reilly Center (2015a) questions whether such enhancements are really unethical if they can be justified on utilitarian grounds. They also promote self-determination and promote strengths in individuals (part of the definition of dignity).

Allhoff, Lin, Moor, and Weckert (2009) suggest, however, that human enhancement technologies directly impact “human dignity” (p. 7); what it means to be human. For instance, they question whether the desire for enhancement shows ingratitude for what we have and (further) enables an attitude of unquenchable dissatisfaction with one’s life. Would human enhancement technologies hinder moral development since many believe that “soul-making” is impossible without struggle? Is the frailty of the human condition necessary to best appreciate life? Can or should children be enhanced to give them an edge in society? Allhoff and colleagues (2009) conclude that a sensible middle path may be the best choice at this point in time and encourage individuals to use their own moral compass to find answers to these difficult questions.

Questions to Consider Before Reading On

1.   In reflecting on the Case Scenario, should Julie’s desire to protect her daughter’s “right not to know” change if she actually develops genetically susceptible cancer?

2.   Should Julie’s decision to be tested be influenced by her daughter’s wish to not know the results?

3.   Does the duty to warn outweigh the need to promote autonomy?

Autonomy

Merriam-Webster defines “autonomy” as “the quality or state of being self-governing” or having “self-directing freedom and especially moral independence” (“Autonomy,” 2016). Rhodes (2013) agrees, suggesting that the ethical principle of autonomy represents a demanding standard for the self-regulation of one’s actions since it gives beings moral worth and holds people responsible for their actions. With autonomy, individuals are viewed as having a distinctive self-legislating ability (assumes decisional capacity) and this requires others to respect their choices.

In health care, however, patients do not always have the capacity or the desire to make autonomous health care decisions. Indeed, the health care system historically has been paternalistic and the ethical principle of agency has been used to justify decision making based on what the provider considered the most appropriate course of action. Merriam-Webster defines agency as “the capacity, condition, or state of acting or of exerting power” to achieve an end (“Agency,” 2016). Agency, however, should also be viewed as a moral directive as most individuals have notions of right and wrong and are held accountable to take actions that are beneficent.

The Internet is one example of an emerging technology that has significant potential to impact patient autonomy. Historically, providers were recognized as the keepers of medical information. This allowed them to be the primary health care decision maker, often relegating patients to a somewhat passive and dependent role (Huston, 2013). The Internet changed these dynamics because it expanded the power and control of health information from providers alone to patients themselves. Indeed, the Internet, which is growing faster than any other medium in the world, has great potential to improve health by enhancing communications and improving access to information for care providers, patients, health plan administrators, public health officials, biomedical researchers, and other health professionals.

Indeed, thousands of health information websites currently exist for consumers to explore in attempting to answer their health-related questions and more are launched daily. “Indeed, when it comes to health-related mobile technology, patients may be more frequent users than health care professionals. Thousands of software applications are developed each year just for personal health issues and medical conditions, and they are easily accessible from smartphones and tablets.”

The end result is that patients have electronic access to medical information on virtually any topic, any time. This suggests that many consumers have at least the opportunity to be better informed about their health care problems and needs than in the past. In fact, this increased opportunity for consumers to access information has resulted in the creation of what is known as the expert patient—a patient who has the confidence, skills, information, and knowledge to participate in his or her health care.

Theoretically, expert patients are better informed and thus better able to be active participants in decision making. Although most providers appreciate well-informed patients who have demonstrated the initiative to learn more about their health care needs and problems, there are concerns regarding the accuracy and currency of information patients find on the Internet. In addition, many patients do not fully understand the information that is available to them, even when it is accurate. Some providers are concerned that patients will inappropriately self-diagnose, leading them to seek inappropriate treatment or no treatment at all.

In addition, little research has been done to validate the currency or accuracy of the information on health care Internet sites. Krotoski (2011), citing a recent study or more than 12,000 people across 12 different countries, noted that more people than ever are using the web to find out more about an ailment before or instead of visiting the doctor. Alarmingly, only a quarter of the people surveyed checked the reliability of health information they found online by looking at the credibility of the source. In addition, Krotoski suggests that “a typical medical consultation follows this trajectory: 1) you discover a growth, 2) do a Google search, 3) believe the first result that confirms your expectations” (para 6).

Krotoski concludes then, that while the wealth of health information online has contributed to a more informed public, the expertise of the professional should not be undermined by the leveling power of the web. Clearly, patients need to become experts at retrieving health care information and deciphering it to better empower themselves in health care decision making and to promote autonomy.

Question to Consider Before Reading On

1.   What safeguards exist or could be created to better ensure accuracy and currency of layman health care information posted on the Internet?

BALANCING THE HUMAN ELEMENT AND TECHNOLOGY

Munro (2012) states:

The human element is the art of nursing and nurses need to be actively involved in determining how best to use technology to supplement, not eliminate, human resources (Huston, 2013). One of the most significant challenges nurse leaders face in using technology is to find that balance between maximizing the benefits of using that technology, while not devaluing the human element. Nurses need to make sure that the human element is not lost in the race to expand technology. Pols (2015) agrees, suggesting that nurses, patients, and ethicists have expressed concern that “care through technology can become a cold and dehumanizing affair.” This is certainly a potential concern with the use of robots as caregivers, with the Internet as a health care tool, and with some new technological devices.

Questions to Consider Before Reading On

1.   What aspects of physical and mental nursing care do you believe could or should be replaced by robotics in the coming decade?

2.   Are the elderly at greater risk of technology-related harm and ethics violations than other age groups?

Robots as Caregivers

Robotics provides a clear example of how the human element is being replaced by or supplemented with technology. Indeed, in some parts of the world, robots are being developed to provide direct patient care, particularly for the elderly. This is especially true in Japan, known as the “Robot Kingdom,” as a result of a burgeoning elderly population and a low birth rate, which has resulted in a severe shortage of caregivers (Huston, 2013).

For example, physical service robots have been created to help with tasks such as washing or carrying elderly people, and mental service robots provide emotional support through therapeutic listening and feedback (robots use vision systems to monitor human expressions, gestures; use body language and voice sensors to pick up on intonation and individual words and sentences; and sense human emotion through wearable sensors that monitor pulse rate and perspiration). In addition, robotic walkers now exist that can obtain information about the environment through sensors, cameras, obstacle recognition systems and software. These walkers can guide elderly users to paths that minimize the chances of stumbling and falls (European Commission, 2015).

Sharkey and Sharkey (2012) suggest, however, that the increased use of robots in elder care raises a number of ethical concerns, including the potential reduction in the amount of human contact (opportunities for human social contact can be reduced); an increase in the feelings of objectification and loss of control (robots lack sensitivity to people’s feelings and provide care at the convenience of caregivers); a loss of privacy; the loss of personal liberty; deception and infantilization (robots may restrict the behavior of humans); and a lack of clarity regarding the circumstances in which elderly people are allowed to control the robots (who is responsible if things go wrong?).

Sharkey and Sharkey suggest that at present:

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