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, 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.     

Probability Biases in Genetic Problem Solving: A Comparison of Undergraduates, Genetic Counseling Graduate Students, and Genetic Counselors

Heuristics are mental shortcuts that aid people in everyday problem-solving and decision-making. Although numerous studies have demonstrated their use in contexts ranging from consumers’ shopping decisions to experts’ estimations of experimental validity, virtually no published research has addressed heuristics use in problems involving genetic conditions and associated risk probabilities. The present research consists of two studies. In the first study, 220 undergraduates attempted to solve four genetic problems—two common heuristic problems modified to focus on genetic likelihood, and two created to study heuristics and probability rule application. Results revealed that the vast majority of undergraduates used heuristics and also demonstrated a complete misuse of probability rules. In the second study, 156 practicing genetic counselors and 89 genetic counseling students solved slightly modified versions of the genetic problems used in Study 1. Results indicated that a large percentage of both genetic counselors and students used heuristics, but the counselors demonstrated superior problem-solving performance compared to both the genetic counseling students and the undergraduates from Study 1. Research, training, and practice recommendations are presented.     

Genetic Information,Rights, and Autonomy

Rights, autonomy, privacy, and confidentialityare concepts commonly used in discussionsconcerning genetic information. When theseconcepts are thought of as denoting absolutenorms and values which cannot be overriden byother considerations, conflicts among themnaturally occur.In this paper, these and related notions areexamined in terms of the duties and obligationsmedical professionals and their clients canhave regarding genetic knowledge. It issuggested that while the prevailing idea ofautonomy is unhelpful in the analysis of theseduties, and the ensuing rights, an alternativereading of personal self-determination canprovide a firmer basis for ethical guidelinesand policies in this field.     

Genetic research,adolescents, and informed consent

The participation of adolescents in genetic research engenders unusual problems concerning the nature of their informed consent. In this study we analyze 70 consent documents collected from genetics investigators in the United States who conduct research with children and adolescents. We find that many consent documents do not reflect either the current or the developing ethical and legal standards for research with adolescents and that in many cases the documents are simply confusing or unclear. We make recommendations for change to reflect more adequately the changing perspective concerning the autonomous decision-making capacity of adolescents.     

Biological Parenthood: Gestational,Not Genetic

Common-sense morality and legislations around the world ascribe normative relevance to biological connections between parents and children. Procreators who meet a modest standard of parental competence are believed to have a right to rear the children whom they brought into the world. I explore various attempts to justify this belief, and find most of these attempts lacking. I distinguish between two kinds of biological connection between parents and children: the genetic link and the gestational link. I argue that the second can better justify a right to rear.     

Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors

Updated from their original publication in 2004, these cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of counseling at-risk individuals through genetic cancer risk assessment with or without genetic testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment and counseling as well as the personal expertise of genetic counselors specializing in cancer genetics. The recommendations are intended to provide information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Essential components include the intake, cancer risk assessment, genetic testing for an inherited cancer syndrome, informed consent, disclosure of genetic test results, and psychosocial assessment. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider's professional judgment based on the clinical circumstances of a client.     

Genetic epistemology,history of science and genetic psychology

Genetic epistemology analyzes the growth of knowledge both in the individual person (genetic psychology) and in the socio-historical realm (the history of science). But what the relationship is between the history of science and genetic psychology remains unclear. The biogenetic law that ontogeny recapitulates phylogeny is inadequate as a characterization of the relation. A critical examination of Piaget's Introduction à l'Épistémologie Généntique indicates these are several examples of what I call stage laws common to both areas. Furthermore, there is at least one example of a paradoxical inverse relation between the two — geometry. Both similarities and differences between the two domains require an explanation, a developmental explanation. Although such an explanation seems to be psychological in nature, it is not merely empirical but also normative (since psychology is both factual and normative according to Piaget). Hence genetic epistemology need not be reduced to psychology (narrowly conceived), but rather should be seen as being both empirical and normative and thus similar to certain types of contemporary philosophy of science.I wish to thank Guy Cellerier, Ken Freeman, Pierre Moessinger, and Pat McKee who provided stimulating conversation on several of the issues discussed in this paper.     

Genetic Engineering,Virtue-First Enhancement,and Deification in Neo-Irenaean Theodicy

This article seeks to provide a unified explanation to two profound challenges to Christian belief: the existence of evil and Darwin’s theory of natural selection. It is argued that an understanding of the full implications of our evolutionary past in conjunction with the Irenaean theodicy provides us with the best answer to these challenges. The traditional Irenaean theodicy emphasizes the importance of education for soul building. Soul building can benefit from technologically enhancing the biological superstructure of our humanity. In particular, genetic engineering can enhance human virtue. The biological basis of our moral natures can be improved using genetic technologies, including (possibly) somatic and germline engineering. To plan for virtue-first enhancement—the Genetic Virtue Project, which focuses on genetic improvements to our moral natures—is of paramount importance for the neo-Irenaean theodicy.     

Attitudes Towards Prenatal Genetic Counseling,Prenatal Genetic Testing,and Termination of Pregnancy among Southeast and East Asian Women in the United States

Recognizing the heterogeneity of the Asian population with regards to acculturation, education, health awareness, and cultural values is vital for tailoring culturally sensitive and appropriate care. Prior studies show that cultural values influence perceptions of genetics within Asian populations. The reputation of the family unit factors into decisions such as pregnancy termination and disclosure of family medical history, and the nondirective model of American genetic counseling may conflict with the historical Asian model of paternalistic health care. Previous studies also provide conflicting evidence regarding correlations between education, acculturation, age, and awareness and perceptions of genetic testing. The aims of this study were to describe attitudes towards prenatal genetics among Southeast and East Asian women living in the United States for varying amounts of time and to explore sociocultural factors influencing those attitudes. Twenty-three Asian women who were members of Asian cultural organizations in the United States were interviewed via telephone about their attitudes towards prenatal genetic counseling, prenatal genetic testing, and termination of pregnancy. Responses were transcribed and coded for common themes using a thematic analysis approach. Four major themes emerged. In general, participants: (1) had diverse expectations for genetic counselors; (2) tended to weigh risks and benefits with regards to genetic testing decisions; (3) had mixed views on termination for lethal and non-lethal genetic conditions; and (4) identified cultural factors which influenced testing and termination such as lack of available resources, societal shame and stigma, and family pressure. These findings may allow prenatal genetic counselors to gain a richer, more nuanced understanding of their Asian patients and to offer culturally tailored prenatal genetic counseling.