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"Schwab, Abraham P"
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Genomic Privacy
Genetic information is unique among all laboratory data because it not only informs the current health of the specific person tested but may also be predictive of the future health of the individual and, to varying degrees, all biological relatives.
As DNA sequencing has become ubiquitous with decreasing cost, large repositories of genomic data have emerged from the domains of research, healthcare, law enforcement, international security, and recreational consumer interest (i.e., genealogy). Broadly shared genomic data are believed to be a key element for future discoveries in human disease. For example, the National Cancer Institute's Genomic Data Commons is designed to promote cancer research discoveries by providing free access to the genome data sets of 12000 cancer patients. However, in parallel with the promise of curing diseases, genomic data also have the potential for harm. Genomic data that are deidentified by standard healthcare practices (e.g., removal of name, date of birth) can be reidentified by methods that combine genomic software with publicly available demographic databases (e.g., phone book). Recent law enforcement cases (i.e., Bear Brook Murders, Golden State Killer) in the US have demonstrated the power of combining DNA profiles with genealogy databases.
We examine the current environment of genomic privacy and confidentiality in the US and describe current and future risks to genomic privacy. Reidentification and inference of genetic information of biological relatives will become more important as larger databases of clinical, criminal, and recreational genomic information are developed over the next decade.
Journal Article
Systemic versus Severable Conflicts of Interest
This paper is split into two parts. The first half analyzes conflicts of interests’ effects on judgment, the harms these effects threaten, and our current policies and practices for handling conflicts of interest. This analysis relies on scholarship in several fields, most prominently psychology, all of which have reasons to worry about conflicts of interest. This analysis will show that our current classifications of conflicts of interest and our current strategies for handling conflicts of interest are confusing, of dubious benefit, or both. The second half provides some tools for helping us to limit or avoid the harms of conflicts of interest. These simple tools focus on how we think about and classify conflicts of interest. Specifically, I recommend beginning to classify conflicts of interest in a new way: as either severable or systemic. These new classifications are not intended to be heavy conceptual machinery, but simple and valuable tools. These new classifications, even though they are not meant to be exhaustive or comprehensive, help delineate tractable strategies and help determine the distribution of responsibilities for addressing specific conflicts of interest.
Journal Article
Privacy in Direct-to-Consumer Genetic Testing
In 2018, a suspect in the Golden State Killer murder cases was identified by use of DTC genetic testing information, 30 years after the last known crime was committed. Since the break in the Golden State Killer cases, >100 law enforcement investigations are now underway using DTC genetic data. The benefits for law enforcement will also hinge on how these samples are used. Since DTC genetic testing can uncover direct and indirect genetic connections between individuals, the increasing use of DTC genetic testing without consumer consent threatens to harm trust in the companies that provide this service as well as increase suspicion of law enforcement strategies. Initially, DeAngelo was not considered as a lead suspect, but upon closer scrutiny of his timeline and through interviews of some of his associates, they developed a high level of confidence that DeAngelo was likely the killer. Since genealogical DNA evidence may not have been admissible in court, the detectives went 1 step further to ensure that their suspect's DNA matched the crime scene DNA. [...]there is the concern for misidentification or misinformation derived from such genetic data that may have lower quality control measures as compared to genetic data derived in the traditional forensics setting.
Journal Article
Defining Conflicts of Interest in Terms of Judgment
Conflicts of interest represent one of the defining problems of our time, and yet a clear definition of what constitutes a conflict of interest remains elusive. To move us closer to resolving this problem, this article first reviews and critiques attempts to define conflicts of interest, and, second, uses these critiques to ground a more conceptually consistent and practically useful definition. This definition builds on, but also breaks away from Michael Davis's (1982) definition of conflicts of interest. Specifically, it articulates and defends defining conflicts of interest in terms of their threat to good judgment but does so in the broadest terms. Defining it in this way expands the domain of conflicts of interest, but also avoids unnecessary conceptual distractions and practical difficulties.
Journal Article
The Human Microbiome
Human microbiome research has revealed that legions of bacteria, viruses, and fungi live on our skin and within the cavities of our bodies. New knowledge from these recent studies shows that humans are superorganisms and that the microbiome is indispensible to our lives and our health. This volume explores some of the science on the human microbiome and considers the ethical, legal, and social concerns that are raised by this research.
eBook
Ensuring fairness in health care coverage
\"Ensuring Fairness in Health Care Coverage\" helps organizations make the difficult choices necessary when considering the health benefits they provide to their employees. Based on a study by the Ethical Force Program, led by the Institute for Ethics at the American Medical Association, this groundbreaking book provides a proactive approach to safeguard against employee resentment, legal appeals, and adverse publicity. The book takes into consideration both the fairness - and the perceived fairness - of the health benefits companies provide to employees, and lays the groundwork for readers to make the best possible choices.
eBook
Formal and effective autonomy in healthcare
This essay lays the groundwork for a novel conception of autonomy that may be called “effective autonomy”—a conception designed to be genuinely action guiding in bioethics. As empirical psychology research on the heuristics and biases approach shows, decision making commonly fails to correspond to people’s desires because of the biases arising from bounded cognition. People who are classified as autonomous on contemporary philosophical accounts may fail to be effectively autonomous because their decisions are uncoupled from their autonomous desires. Accordingly, continuing attempts to value patient autonomy must go beyond existing philosophical conceptions of autonomy to consider the background conditions of human decision making.
Journal Article
Bioethics Made Rigorous
Urging us to abandon the hemming and hawing over what \"autonomy,\" \"beneficence,\" \"nonmaleficence,\" or \"justice\" means in any particular case, Baron wants \"to discuss several issues that engage bioethics today, and then show how these issues can be illuminated by applied utilitarianism, in the form of decision analysis\" (p. 5). Baron's goal is not to convince bioethicists to stop using familiar principles, but to establish that \"all of the basic principles used in applied bioethics can be understood as having utilitarian roots\" (p. 18), and that by situating them in a utilitarian framework, we can evaluate their application according to a common standard.
Book Review