This paper attempts to establish the epistemological import and limits of informed consent in clinical research. It points out that informed consent is a necessary requirement in clinical research because it ensures adequate participation of care receivers in issues relating to their health. Besides ensuring that care receivers have knowledge of whatever medical intervention they are consenting to, informed consent, as an ideal, provides assurance that care receivers and others are neither coerced nor deceived. While the question of the value (...) of informed consent in health care delivery is not so much controverted, in contest is the question of whether or not complete and wholly specifically informed consent can indeed be realized in medical intervention. Two orientations are identified in this debate. One insists that an individual will be able to make an informed decision and make reasonable choices amongst alternatives when fully informed. The other orientation sees as an epistemic illusion, achieving full informed consent, and rather opts for informed request. This paper examines this debate by clarifying the notion of informed consent, its components and its nexus with knowledge. The position of the paper is that informed consent is not only an ethical ideal in clinical research and health care; it is also an epistemic virtue that must be continuously strived towards. This paper establishes that health care receivers can only have an epistemic claim of their medical situation if all requirements of informed consent in health care delivery such as provision of adequate information, the risk and benefits of treatment, avoidance of vague/ambiguous statements, voluntariness, etc. are met. (shrink)

Conley and colleagues (2023) conduct a fascinating analysis of how influential organizations in the global governance of human genome editing debate conceptualize and perform public engagement. Whi...

Genes have long been used to validate social inequality. The Genetic Lottery: Why DNA Matters for Social Equality, by Kathryn Paige Harden, attempts not only to reclaim genetic research on human behavior from its eugenic past but also to argue that genetic research can be used to understand and enhance social equality. This review essay illustrates why embracing a political agenda in which genetics matter for social equality will not in practice advance efforts to reduce social inequality. It argues that (...) the points raised in The Genetic Lottery would be important in an alternate world in which structural inequalities have ceased to exist, but not in the world we live in today. (shrink)

Although Burt provides a valuable critique of the scientific value of integrating genetic data into social science research, she reinforces rather than disrupts the age-old horserace between genetic effects and environmental effects. We must move past this false dichotomy to create a new ontology that recognizes the ways in which genetic and environmental processes are inextricably intertwined.

In this work, we study and analyze the aggregate death counts of COVID-19 reported by the United States Centers for Disease Control and Prevention (CDC) for the fifty states in the United States. To do this, we derive a stochastic model describing the cumulative number of deaths reported daily by CDC from the first time Covid-19 death is recorded to June 20, 2021 in the United States, and provide a forecast for the death cases. The stochastic model derived in this (...) work performs better than existing deterministic logistic models because it is able to capture irregularities in the sample path of the aggregate death counts. The probability distribution of the aggregate death counts is derived, analyzed, and used to estimate the count’s per capita initial growth rate, carrying capacity, and the expected value for each given day as at the time this research is conducted. Using this distribution, we estimate the expected first passage time when the aggregate death count is slowing down. Our result shows that the expected aggregate death count is slowing down in all states as at the time this analysis is conducted (June 2021). A formula for predicting the end of Covid-19 deaths is derived. The daily expected death count for each states is plotted as a function of time. The probability density function for the current day, together with the forecast and its confidence interval for the next four days, and the root mean square error for our simulation results are estimated. (shrink)

In their article on the limited duty to reinterpret genetic variants, Watts and Newson argue that clinical labs are not morally obligated to conduct routine reinterpretation despite its potential clinical and personal value.1 We endorse the authors’ argument for a circumscribed duty to reclassify genomic variants in certain cases, including to promote diagnostic equity for racial and ethnic minority populations that have been historically excluded from and exploited by genomic research and medicine. However, given the history and resilience of scientific (...) racism, the use of socially constructed racial and ethnic categories to enhance diagnostic equity raises several ethical and practical challenges. In the short term, using socially constructed racial and ethnic categories to identify patients for variant reclassification is a practical approach for addressing concerns of diagnostic equity. In contrast, diagnostic accuracy depends on patients’ genetic similarity to reference genomes, rather than their socially determined race or ethnicity.2 Thus, in the long term, securing both diagnostic equity and diagnostic accuracy through targeted variant reclassification will require a shift away from relying on race and ethnicity and towards assessing genetic similarity. Critically, the identification of patients for genomic variant reclassification using socially constructed race or ethnicity runs the risk of perpetuating the harmful …. (shrink)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on (...) the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research. (shrink)