Publication Types:

Privacy and ethics in brain-computer interface research

BioethicsPrivacy and surveillanceTechnology and ethics
Eran Klein, Alan Rubel
Chang S. Nam, Anton Nijholt, and Fabien Lotte (eds) Brain–Computer Interfaces Handbook: Technological and Theoretical Advances (CRC Press: 2018):
Publication year: 2018

Neural engineers and clinicians are starting to translate advances in electrodes, neural computation, and signal processing into clinically useful devices to allow control of wheelchairs, spellers, prostheses, and other devices. In the process, large amounts of brain data are being generated from participants, including intracortical, subdural and extracranial sources. Brain data is a vital resource for BCI research but there are concerns about whether the collection and use of this data generates risk to privacy. Further, the nature of BCI research involves understanding and making inferences about device users’ mental states, thoughts, and intentions. This, too, raises privacy concerns by providing otherwise unavailable direct or privileged access to individuals mental lives. And BCI-controlled prostheses may change the way clinical care is provided and the type of physical access caregivers have to patients. This, too, has important privacy implications. I In this chapter we examine several of these privacy concerns in light of prominent views of the nature and value of privacy. We argue that increased scrutiny needs to be paid to privacy concerns arising from Big Data and decoding of mental states, but that BCI research may also provide opportunity for individuals to enhance their privacy.

Four Ethical Priorities for Neurotechnologies and AI

BioethicsPrivacy and surveillanceTechnology and ethics
Rafael Yuste, Sarah Goering, et al
Nature 551 (7679) (November 9, 2017): 159-163
Publication year: 2017

Artificial intelligence and brain–computer interfaces must respect and preserve people’s privacy, identity, agency and equality, say Rafael Yuste, Sara Goering and colleagues:

Blaise Agüera y Arcas, Guoqiang Bi, Jose M. Carmena, Adrian Carter, Joseph J. Fins, Phoebe Friesen, Jack Gallant, Jane E. Huggins, Judy Illes, Philipp Kellmeyer, Eran Klein, Adam Marblestone, Christine Mitchell, Erik Parens, Michelle Pham, Alan Rubel, Norihiro Sadato, Laura Specker Sullivan, Mina Teicher, David Wasserman, Anna Wexler, Meredith Whittaker& Jonathan Wolpaw

Privacy and Confidentiality in Pragmatic Clinical Trials

BioethicsPrivacy and surveillance
Deven McGraw, Sarah M. Greene, Caroline S. Miner, Karen L. Staman, Mary Jane Welch, and Alan Rubel
Clinical Trials 12(5) (October 2015): 520-52
Publication year: 2015

Abstract: With pragmatic clinical trials (PCTs) an opportunity exists to answer important questions about the relative risks, burdens, and benefits of therapeutic interventions. However, concerns about protecting the privacy of this information are significant and must be balanced with the imperative to learn from the data gathered in routine clinical practice. Traditional privacy protections for research uses of identifiable information rely disproportionately on informed consent or authorizations, based on a presumption that this is necessary to fulfill ethical principles of respect for persons. But frequently the ideal of informed consent is not realized in its implementation. Moreover, the principle of respect for persons,—which encompasses their interests in health information privacy,—can be honored through other mechanisms. Data anonymization also plays a role in protecting privacy but is not suitable for all research, particularly PCTs. In this paper we explore both the ethical foundation and regulatory framework intended to protect privacy in PCTs. We then review examples of novel approaches to respecting persons in research that may have the added benefit of honoring patient privacy considerations.

Autonomy, Surveillance, and Privacy

BioethicsPrivacy and surveillance
Alan Rubel
The Routledge Companion to Bioethics (John Arras, Rebecca Kukla, and Elizabeth Fenton, eds.,) (Routledge 2014): 312-324
Publication year: 2014

Justifying Public Health Surveillance: Basic Interests, Unreasonable Exercise, and Privacy

BioethicsPrivacy and surveillance
Alan Rubel
Kennedy Institute of Ethics Journal 22(1): 1-33 (2012)
Publication year: 2012

Abstract: Surveillance plays a crucial role in public health and for obvious reasons conflicts with individual privacy. This article argues that the predominant approach to the conflict—relying on a conceptual distinction between research and practice—is problematic and then offers an alternative. It outlines a basic interests approach to public health measures and an unreasonable exercise argument, which sets forth conditions under which individuals may justifiably exercise individual privacy claims that conflict with public health goals. The view articulated is compatible with a broad range of conceptions of the value of health.

Local Trans Fat Bans and Consumer Autonomy

BioethicsFood LabelingTechnology and ethics
Alan Rubel
American Journal of Bioethics 10(3): 41-42 (2010)
Publication year: 2010

The target article argues that current efforts to ban trans fats from restaurant foods are problematic because they risk further bans on unhealthy foods, which would be an unjustified restriction of an important personal freedom: “The freedom to choose what we eat.” This, as Resnik notes, is an empirical slippery slope argument; it is based on a hypothesis regarding the likelihood that further food bans would occur in the wake of trans fat bans. This commentary argues that there are important limitations to the argument. Including empirical differences between trans fats and other restrictions, limitations on the regulation, and proper understanding of consumer autonomy.

Genetically Engineered Animals and Ethics of Food Labeling

BioethicsFood LabelingTechnology and ethics
Robert Streiffer and Alan Rubel
Labeling Genetically Modified Foods (Paul Weirich, ed., Environmental Ethics and Science Policy Series, Oxford University Press): 63-87 (2007)
Publication year: 2007

The current debate about labeling genetically engineered (GE) food focuses on food derived from GE crops, neglecting food derived from GE animals. This is not surprising, as GE animal products have not yet reached the market. Participants in the debate may also be assuming that conclusions about GE crops automatically extend to GE animals. But there are two GE animals – the Enviropig and the AquAdvantage Bred salmon – that are approaching the market, animals raise more ethical issues than plants, and U.S. regulations treat animal products differently from crops. This paper therefore examines the specific question of whether there should be mandatory labeling on all food products derived from GE animals. We examine the likely regulatory pathways, salient differences between GE animals and GE crops, and relevant social science research on consumers’ attitudes. We argue that on any of the likely pathways, the relevant agency has a democratic obligation to require labeling for all GE animal food products.

Medical Privacy and the Public’s Right to Vote: What Presidential Candidates Should Disclose

BioethicsPrivacy and surveillance
Robert Streiffer, Julie Fagan, and Alan Rubel
Journal of Medicine and Philosophy 31(4): 417-439 (2006)
Publication year: 2006

We argue that while presidential candidates have the right to medical privacy, the public nature and importance of the presidency generate a moral requirement that candidates waive those rights in certain circumstances. Specifically, candidates are required to disclose information about medical conditions that are likely to seriously undermine their ability to fulfill what we call the core functions of the office of the presidency. This requirement exists because (1) people have the right to be governed only with their consent, (2) people’s consent is meaningful only when they have access to information necessary for making informed voting decisions, (3) such information is necessary for making informed voting decisions, and (4) there are no countervailing reasons sufficiently strong to override this right. We also investigate alternative mechanisms for legally encouraging or requiring disclosure. Protecting the public’s right to this information is of particular importance because of the documented history of deception and secrecy regarding the health of presidents and presidential candidates.

Respecting the Autonomy of European and American Consumers: Defending Positive Labels on GM Foods

BioethicsFood LabelingTechnology and ethics
Alan Rubel and Robert Streiffer
Journal of Agricultural and Environmental Ethics 18(1): 75-84 (2005)
Publication year: 2005

In her recent article, “Does autonomy count in favor of labeling genetically modified food?,” Kirsten Hansen argues that in Europe, voluntary negative labeling of non-GM foods respects consumer autonomy just as well as mandatory positive labeling of foods with GM content. She also argues that because negative labeling places labeling costs upon those consumers that want to know whether food is GM, negative labeling is better policy than positive labeling. In this paper, we argue that Hansen’s arguments are mistaken in several respects. Most importantly, she underestimates the demands of respecting autonomy and overestimates the cost of positive labeling. Moreover, she mistakenly implies that only a small minority of people desire information about GM content. We also explore the extent to which her arguments would apply to the US context, and argue that any discussion of the relationship between autonomy and labeling should include not just considerations of consumer autonomy but also considerations of what we call citizen autonomy.

Democratic Principles and Mandatory Labeling of Genetically Engineered Foods

BioethicsFood LabelingTechnology and ethics
Robert Streiffer and Alan Rubel
Public Affairs Quarterly 18(3): 223-248 (2004)
Publication year: 2004

Despite the fact that public opinion overwhelmingly supports mandatory labeling for genetically engineered foods, the FDA recently reaffirmed its original 1992 decision not to require labels, claiming that there is no scientific basis for concluding that GE food are less healthful than others foods. In this paper, we give two arguments about how this conflict between public opinion and the FDA ought to be resolved. The first is the Consumer Autonomy Argument, which applies to the FDA and appeals to moral principles about how public agencies within a democracy should exercise their discretion. We argue that the Food, Drug, and Cosmetic Act (FDCA) gives the FDA the discretion to require labels, and that the FDA has a moral and democratic obligation to exercise that discretion so as to require labeling. The second is the Democratic Equality Argument, which applies to Congress and concerns its democratic responsibility to defer to public opinion on certain kinds of issues. We conclude that if the FDA fails to require labeling, Congress should.

Choice Versus Autonomy in the GM Food Debate

BioethicsFood Labeling
Robert Streiffer and Alan Rubel
AgBioForum 6(3): 141-142 (2003)
Publication year: 2003

In their article “Mandatory Labeling of Genetically Modified Foods: Does It Really Provide Consumer Choice?,” which appeared in AgBioForum 6(1&2), Carter and Gruère (2003) argue against those who think that mandatory labeling of genetically modified (GM) food products is justified merely by “the desire to provide informed consumer choice” (p. 68). They argue that because of consumer aversion to GM products, mandatory labeling will result in “most (if not all) processors” avoiding GM products (p. 69). Moreover, if labeling makes those products unavailable, then it does not facilitate consumer choice. This paper argues that the argument misses the mark because of the important differences between choice, informed choice, and autonomy.