Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?

I. Introduction II. Theoretical Underpinnings and Foundation of Insurance Regulation III. Policy Approaches ... A. Prohibitive Approach ... B. Status Quo Approach ... C. Rational Discrimination Approach ... 1. United Kingdom Moratorium and Concordat ... 2. Australian Guidance ... 3. U.S. Uniform Law Commission Proposal IV. Risk Classification and Economic Efficiency ... A. Classifying Risk ... B. Why Insurers Classify Risks ... C. Choosing a Risk Characteristic ... 1. Statistical Considerations ... 2. Operational Considerations ... 3. Social Considerations V. Genetic Test Results and Insurance ... A. Genetic Test Results as Risk Characteristics ... B. Current Use of Genetic Test Results ... 1. Insurer Access to Genetic Test Results … 2. Insurer Use of Genetic Test Results VI. Are Transparency and Oversight Necessary? ... A. Insurer Misuse of Genetic Test Results ... B. Transparency of the Insurance Market ... C. The Arms Race of Risk Classification ... D. Fear of Genetic Discrimination VII. Standards of Evidence ... A. Uniform Law Commission Draft ... B. U.K. Moratorium ... C. Australian Guidance ... D. Additional Considerations ... 1. What Types of Evidence Are Sufficient? ... 2. How Should the Context of Genetic Tests Come into Play? ... 3. Should Relevance Be Measured by Marginal Added Value? ... 4. How Should Preventive and Treatment Measures Be Taken into Account? ... 5. How Should Variants Within a Gene Be Considered? VIII. The Case for a Rational Discrimination Approach ... A. Prohibitive Approach Comparison ... B. Status Quo Consideration IX. Conclusio

Disclosing Privacy and Discrimination Protections in Informed Consent

Recent empirical work shows that providing greater detail about limitations of genetic anti-discrimination protections in informed consent documents is likely to lower individuals’ willingness to participate in research studies. This article presents these empirical findings and analyzes the implications of the findings for clinical care and for privacy and discrimination risks beyond genetic discrimination. While the paper argues that further research is needed to fully understand the potential implications of disclosure of legal protections in the clinical setting, there are clear implications in the research setting. Since individuals are likely to alter their decision to participate in research based on the depth of information provided, informed consent should contain detailed information about privacy and discrimination risks. However, for participants to truly understand the risk of loss of privacy and potential for discrimination that flows from information disclosures in research, they arguably must have a robust understanding of both when and how information may be shared, but also the legal protections and limitations that govern use of that data. Now, more than ever, it is essential to understand the privacy risks associated with joining a study since research trends related to big data and secondary research are vastly increasing the privacy risks for participants. Yet, while it is easy to state that individuals should be told of both privacy and anti-discrimination laws and their respective limitations, disclosing these in practice is much more complex. For every law, there are countless limitations that could be enumerated, but such disclosures would quickly make informed consent unwieldy and counterproductive. Thus, this paper argues that institutional review boards (“IRBs”) can help to find a limiting principle to the disclosures by assessing the likelihood of harm and contextualizing the risks to the study population. This will balance between over- and under-disclosure of legal protections and limitations while still fulfilling important foundational goals of informed consent

Analysis of state laws on informed consent for clinical genetic testing in the era of genomic sequencing

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/143694/1/ajmgc31608_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/143694/2/ajmgc31608.pd

Genetic Information, Non-Discrimination, and Privacy Protections in Genetic Counseling Practice

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, six 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

Which Results to Return: Subjective Judgments in Selecting Medically Actionable Genes

Background: Advances in genomics have led to calls for returning information about medically actionable genes (MAGs) to patients, research subjects, biobank participants, and through screening programs, the general adult population. Which MAGs are returned affects the harms and benefits of every genetic testing endeavor. Despite published recommendations of selection criteria for MAGs to return, scant data exist regarding how decision makers actually apply such criteria

Religious fanaticism and thugocracy : catalysts to the brain drain in Nigeria

Nigeria is a multi-ethnic and multicultural society, and therefore, Nigeria’s religious inclinations differ broadly. There are currently three religions dominant in Nigeria, namely Christianity, Islam and African Traditional Religion (ATR). These three religions, especially the first two, have demonstrated varying levels of fanaticism in the past leading to many recounted crises and jungle justice incidents in Nigeria. Because of Nigerian politics, we have witnessed the use of armed thugs by politicians to harass and even kill party opponents and displace their families. These two factors have caused many young, highly skilled persons to flee Nigeria for a safer haven. This study therefore tries to review current religious fanaticism and electioneering thuggery leading to loss of lives and property, which consequently sees to the fall of the Nigerian economy and the subsequent enthronement of insecurity in the country. It suggests that these factors are foundational problems consequent to the amalgamation of 1914 and are leading causes for the rapid rate of migration of Nigerian experts out of the country. CONTRIBUTION : At a time when Nigeria is in dire need of great brains to help in its developmental struggle, politicians and religious bigots have constituted a serious blockade to this ambition. This article is a review of recent political and religious turmoil in Nigeria with a view to call the attention of all warring religious and political stakeholders to the damage their extremism has already caused and to also bring the attention of Nigerians to the foundation of these problems, namely the amalgamation and the need to address it.http://www.hts.org.zaam2023New Testament Studie

That they may be one (Jn 17:11) : mending the seamless coat of Christ in assemblies of God Nigeria

Assemblies of God church in Nigeria, which has for over 40 years now, experienced various crises that have led to sucession and factionalism in that church. The once giant of spirituality and the mother of Pentecostalism has grappled with the problem of administration, leadership tussle and bigotry. This study is a review of previous and current crises that AG Nigeria has gone through at the General Council level in a bid to mend what seems to have torn asunder the seamless coat of Christ in line with the prayer of Jesus, ‘that they may be one’. The study uses historical-critical method and phenomenological design to analyse the depth of the crack in the church in order to predict the future of Pentecostalism in Nigeria.http://www.hts.org.zaNew Testament Studie