Ethical Implications of Literacies’ Requirements

Honoring the patient’s right to autonomy involves helping her to make decisions that are truly informed. This refers to the professional’s ethical behavioral norm of veracity: “the professional duty to provide accurate, timely, objective, and comprehensive transmission of information” (Byrd & Winkelstein, 2014). Adhering to this norm can be a challenge, however, because the success of an information transaction is not a function of the information alone. Rather, it is determined by the interaction among: 1) the information provider, 2) the message; 3) the delivery channel, and 4) various competencies and characteristics of the person on the receiving end.

Part I: Chapter 3 of this text outlines six knowledge-related competencies that determine one’s ability to deal with digital health information (Norman & Skinner, 2006). These include:

  • • Traditional literacy: the ability to read and understand texts
  • • Information literacy: knowledge how to search for information
  • • Media literacy: the ability to understand social and political context behind messages
  • • Health literacy: the ability to deal with health information, from understanding medical terms to interpreting risks in the health context
  • • Computer literacy: the ability to use computers (and other digital information devices) effectively
  • • Science literacy: the ability to understand scientific foundations of health information

In addition to these competencies, there are other characteristics that affect information access, including money, time, health, and emotional state. This section will focus on the six literacies, drawing on DTC-G testing as an exemplary domain.

People vary with regards to their levels of the above competencies. For example, in Part I, Chapter 3, we state that, according to an authoritative assessment study, only about 12% of American adults have a “Proficient” level of health literacy, defined by that study as “the ability to understand medical terms and information” (US Department of Education, 2006). According to the same study, 14% have the level that is “Below Basic.” There are also differences with regard to computer and internet use competencies. For example, according to Anderson et al. (2019), 10% of Americans reported not using the internet in 2019. Those less likely to be comfortable with internet technologies are more likely to be older (over 65), poorer, non-White, and living in rural areas (Anderson & Kumar, 2019; Perrin, 2019; Perrin & Turner, 2019). This discrepancy in information access and use, as noted earlier in this chapter, is often referred to as the “digital divide” (van Dijk, 2006).

When seen from one angle, the digital divide is closing. More and more people, from more and more diverse population groups, go online, and their motivation often includes searching for health information. Ubiquity of smartphones is also playing a role in closing the divide, as more people come to rely on them as their primary tool for going online (Perrin & Turner, 2019). At the same time, as new exciting devices appear, their relatively faster spread in the younger, healthier, and more well-off segment of the market contributes to broadening the divide at the cutting edge of technology access. Thus, pioneering cutting-edge technology has ethical implications. When introducing new features, designers and developers of resources should ask themselves the uncomfortable question: what population segment is this choice most likely to leave behind? The next question should be pragmatic: what information formats and tools should be provided to level the playing field for those unlikely to benefit from the shiniest option?

When it conies to DTC-G testing, the access differential is significant, in large part due to the cost of testing, which has ranged from under a hundred to several thousand dollars for. In addition, the impact of one’s social environment and health and scientific literacy determine one’s perception of the test’s utility and the interpretation of the results.

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