Big data and Artificial Intelligence ("AI") are revolutionizing the ways in which firms, governments, and employers classify individuals. Surprisingly, however, one of the most important threats to ...anti-discrimination regimes posed by this revolution is largely unexplored or misunderstood in the extant literature. This is the risk that modern algorithms will result in "proxy discrimination." Proxy discrimination is a particularly pernicious subset of disparate impact. Like all forms of disparate impact, it involves a facially neutral practice that disproportionately harms members of a protected class. But a practice producing a disparate impact only amounts to proxy discrimination when the usefulness to the discriminatorofthe facially neutral practice derives, at least in part, from the very fact that it produces a disparate impact. Historically, this occurred when a firm intentionally sought to discriminate against members of a protected class by relying on a proxy for class membership, such as zip code. However, proxy discrimination need not be intentional when membership in a protected class is predictive of a discriminator's facially neutral goal, making discrimination "rational." In these cases, firms may unwittingly proxy discriminate, knowing only that a facially neutral practice produces desirable outcomes. This Article argues that AI and big data are game changers when it comes to this risk of unintentional, but "rational," proxy discrimination. AIs armed with bigdata are inherently structured to engage in proxy discrimination whenever they are deprived of information about membership in a legally suspect class whose predictive power cannot be measured more directly by non-suspect data available to the AI. Simply denying AIs access to the most intuitive proxies for such predictive but suspect characteristics does little to thwart this process; instead it simply causes AIs to locate less intuitive proxies. For these reasons, as AIs become even smarter and big data becomes even bigger, proxy discrimination will represent an increasingly fundamental challenge to anti-discrimination regimes that seek to limit discrimination based on potentially predictive traits. Numerous anti-discrimination regimes do just that, limiting discrimination based on factors like preexisting conditions, genetics, disability, sex, and even race. This Article offers a menu of potential strategies for combatting this risk of proxy discrimination by AIs, including prohibiting the use ofnon-approved types of discrimination, mandating the collection and disclosure of data about impacted individuals' membership in legally protected classes, and requiring firms to employ statistical models that isolate only the predictive power of non-suspect variables.
This Viewpoint discusses proposed and enacted state legislation to protect genetic privacy for those participating in direct-to-consumer genetic testing and ensuring genetic antidiscrimination for ...life, health, long-term care, and disability insurance.
Fear of genetic discrimination has led individuals worldwide to avoid medically recommended genetic testing and participation in genomics research, causing potential health effects as research and ...clinical care are stymied. In response, many countries have adopted policies that regulate how insurers, such as life, disability, or critical illness insurers, can underwrite using genetic test results. This article presents a comparison of policies in the United Kingdom, Canada, and Australia, through analysis of interviews with 59 key stakeholders representing insurance, government, advocacy, academia, and genetics. While the ultimate policy of each country is different, the policy motivations and issues raised share commonalities across the countries, particularly around themes of fairness, usefulness of genetic information, and the determination of actuarial fairness.
Shared decision-making in vascular surgery Xu, Jun; Prince, Anya E.R.
Journal of vascular surgery,
November 2019, 2019-11-00, 20191101, Letnik:
70, Številka:
5
Journal Article
Recenzirano
Odprti dostop
Ideally, patients' decision-making regarding surgical options should reflect myriad implicit values. The informed consent process is meant to ensure that patients' values mirror clinical decisions ...regarding expectations for outcomes, such as quality of life, life expectancy, and subsequent pain and suffering. However, surgeons are not always equipped to discuss patients' values.
Shared decision-making is a method that could help surgeons elicit patients' values and subsequently improve the patient's knowledge and satisfaction, among other important outcomes. Yet, several barriers hinder implementation of shared decision-making in the clinic, such as time, interpersonal characteristics, and trust. To address concerns, several tools and approaches have been developed to increase shared decision-making in the clinic. This article highlights two strategies: the three-talk model and decision aids.
Shared decision-making is a tool that could be especially valuable in discussions regarding elective surgery. Further research is needed to determine how best to implement shared decision-making in the surgical setting. Without full integration of patients' values into discussions of surgical options, there will continue to be a disconnect between the surgical procedures, outcomes, and patients' values.
This Viewpoint discusses privacy and discrimination issues raised when direct-to-consumer (DTC) genetic testing companies give law enforcement agencies access to their data, and gaps in ...nondiscrimination and HIPAA regulations protecting consumers of DTC genetic testing more generally.
More than a decade after the Genetic Information Nondiscrimination Act (GINA) was passed, there is a paucity of research on the general public's awareness of GINA. This study's objective was to ...assess knowledge of GINA and concerns of genetic discrimination.
A quota-based sample of US adults (N = 421) was recruited via Qualtrics Research Services to complete an online survey.
Overall, participants had a mean age of 43.1 (SD = 13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M = 3.10, SD = 1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA does not covers life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M = 4.68, SD = 1.89) or health insurance (M = 4.94, SD = 1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA.
This study highlights continued public concern about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.
Polygenic risk scores (PRS), which offer information about genomic risk for common diseases, have been proposed for clinical implementation. The ways in which PRS information may influence a ...patient's health trajectory depend on how both the patient and their primary care provider (PCP) interpret and act on PRS information. We aimed to probe patient and PCP responses to PRS clinical reporting choices METHODS: Qualitative semi-structured interviews of both patients (N=25) and PCPs (N=21) exploring responses to mock PRS clinical reports of two different designs: binary and continuous representations of PRS.
Many patients did not understand the numbers representing risk, with high numeracy patients being the exception. However, all the patients still understood a key takeaway that they should ask their PCP about actions to lower their disease risk. PCPs described a diverse range of heuristics they would use to interpret and act on PRS information. Three separate use cases for PRS emerged: to aid in gray-area clinical decision-making, to encourage patients to do what PCPs think patients should be doing anyway (such as exercising regularly), and to identify previously unrecognized high-risk patients. PCPs indicated that receiving "below average risk" information could be both beneficial and potentially harmful, depending on the use case. For "increased risk" patients, PCPs were favorable towards integrating PRS information into their practice, though some would only act in the presence of evidence-based guidelines. PCPs describe the report as more than a way to convey information, viewing it as something to structure the whole interaction with the patient. Both patients and PCPs preferred the continuous over the binary representation of PRS (23/25 and 17/21, respectively). We offer recommendations for the developers of PRS to consider for PRS clinical report design in the light of these patient and PCP viewpoints.
PCPs saw PRS information as a natural extension of their current practice. The most pressing gap for PRS implementation is evidence for clinical utility. Careful clinical report design can help ensure that benefits are realized and harms are minimized.
The passage of the Genetic Information Non Discrimination Act (GINA) was hailed as a pivotal achievement that was expected to calm the fears of both patients and research participants about the ...potential misuse of genetic information. However, 6 years later, patient and provider awareness of legal protections at both the federal and state level remains discouragingly low, thereby, limiting their potential effectiveness. The increasing demand for genetic testing will expand the number of individuals and families who could benefit from obtaining accurate information about the privacy and anti-discriminatory protections that GINA and other laws extend. In this paper we describe legal protections that are applicable to individuals seeking genetic counseling, review the literature on patient and provider fears of genetic discrimination and examine their awareness and understandings of existing laws, and summarize how genetic counselors currently discuss genetic discrimination. We then present three genetic counseling cases to illustrate issues of genetic discrimination and provide relevant information on applicable legal protections. Genetic counselors have an unprecedented opportunity, as well as the professional responsibility, to disseminate accurate knowledge about existing legal protections to their patients. They can strengthen their effectiveness in this role by achieving a greater knowledge of current protections including being able to identify specific steps that can help protect genetic information.
A fundamental ethical issue in African genomics research is how socio-cultural factors impact perspectives, acceptance, and utility of genomic information, especially in stigmatizing conditions like ...orofacial clefts (OFCs). Previous research has shown that gatekeepers (e.g., religious, political, family or community leaders) wield considerable influence on the decision-making capabilities of their members, including health issues. Thus, their perspectives can inform the design of engagement strategies and increase exposure to the benefits of genomics testing/research. This is especially important for Africans underrepresented in genomic research. Our study aims to investigate the perspectives of gatekeepers concerning genomic risk information (GRI) in the presence of OFCs in a sub-Saharan African cohort.
Twenty-five focus group discussions (FGDs) consisting of 214 gatekeepers (religious, community, ethnic leaders, and traditional birth attendants) in Lagos, Nigeria, explored the opinions of participants on genomic risk information (GRI), OFC experience, and the possibility of involvement in collaborative decision-making in Lagos, Nigeria. Transcripts generated from audio recordings were coded and analyzed in NVivo using thematic analysis.
Three main themes-knowledge, beliefs, and willingness to act-emerged from exploring the perspective of gatekeepers about GRI in this group. We observed mixed opinions regarding the acceptance of GRI. Many participants believed their role is to guide and support members when they receive results; this is based on the level of trust their members have in them. However, participants felt they would need to be trained by medical experts to do this. Also, religious and cultural beliefs were crucial to determining participants' understanding of OFCs and the acceptance and utilization of GRI.
Incorporating cultural sensitivity into public engagement could help develop appropriate strategies to manage conflicting ideologies surrounding genomic information in African communities. This will allow for more widespread access to the advances in genomics research in underrepresented populations. We also recommend a synergistic relationship between community health specialists/scientists, and community leaders, including spiritual providers to better understand and utilize GRI.
The vision of the American Society of Human Genetics (ASHG) is that people everywhere will realize the benefits of human genetics and genomics. Implicit in that vision is the importance of ensuring ...that the benefits of human genetics and genomics research are realized in ways that minimize harms and maximize benefits, a goal that can only be achieved through focused efforts to address health inequities and increase the representation of underrepresented communities in genetics and genomics research. This guidance is intended to advance community engagement as an approach that can be used across the research lifecycle. Community engagement uniquely offers researchers in human genetics and genomics an opportunity to pursue that vision successfully, including by addressing underrepresentation in genomics research.
This guidance is intended to advance community engagement as an approach that can be used across the research lifecycle. Community engagement uniquely offers researchers in human genetics and genomics an opportunity to pursue that vision successfully, including by addressing underrepresentation in genomics research.
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