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Article round-up: June 2011

6 June 2011

Welcome to your sun-drenched June 2011 article round-up. Comments and observations welcome as always.



Frith, L; Jacoby, A; Gabbay, M. Ethical boundary-work in the infertility clinic. SOCIOLOGY OF HEALTH & ILLNESS 33 (4): 570-585 MAY 2011

Infertility practice and reproductive technologies are generally seen as ‘controversial’ areas of scientific inquiry that raise many complex ethical issues. This paper presents a qualitative study that considered how clinicians constructed the role of the ‘ ethical ‘ in their everyday practice. We use the concept of ethical boundary-work to develop a theory of ‘settled’ and ‘controversial’ morality to illuminate how infertility clinicians drew boundaries between different conceptions of the role ethics played in their practice. An attention to areas of settled morality, usually rendered invisible by their very nature, enables us to see how clinicians manage the ‘ ethical ‘ in their practice. We argue that by creating a space of ‘no- ethics ‘ in their practice – part of a settled morality that does not require articulation – the informants re-appropriate an area of their practice from ‘outside’ influences and control. Bringing these elements to light can help ‘outsiders! ‘ to challenge and question these distinctions and therefore bring additional perspectives to debates over morality in the infertility clinic. Illuminating the everyday ethical concerns of infertility clinicians can help direct ethical thinking towards these practical concerns, as well as to more abstract debates.

Bryant, LD; Ahmed, S; Ahmed, M; Jafri, H; Raashid, Y. ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan. SOCIAL SCIENCE & MEDICINE 72 (8): 1393-1399 APR 2011

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the ‘will of God’ was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more ‘scientific worldview’ of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.

Goldenberg, AJ; Hull, SC; Wilfond, BS; Sharp, RR. Patient Perspectives on Group Benefits and Harms in Genetic Research. PUBLIC HEALTH GENOMICS 14 (3): 135-142 2011

Background: It is unclear how the possible effects of genetic research on socially identifiable groups may impact patient willingness to donate biological samples for future genetic studies. Methods: Telephone interviews with patients at 5 academic medical centers in the U. S. examined how patients’ beliefs about benefits and harms to ones racial or ethnic group shape decisions to participate in genetic research. Results: Of the 1,113 patients who responded to questions about group harms and benefits, 61% of respondents indicated that potential benefits to their own racial or ethnic group would be a big or moderate part of their decision to donate a sample for genetic research. 63% of black respondents and 57% of white respondents indicated that they were ‘very’ or ‘moderately concerned’ about genetic research findings being used to discriminate against people by race or ethnicity. 64% of black and 34% of white respondents reported that their willingness to donate a blood sample would be substantially reduced due to these concerns. Conclusion: Our findings suggest that a key factor in many patients’ decisions to donate samples for genetic research is how those studies may impact identifiable racial and ethnic groups. Given the importance of these considerations to many patients, our study highlights a need to address patients’ concerns about potential group benefits and harms in the design of future research studies and DNA biobanks.

Howard, HC; Joly, Y; Avard, D; Laplante, N; Phillips, M; Tardif, JC. Informed consent in the context of pharmacogenomic research: ethical considerations. PHARMACOGENOMICS JOURNAL 11 (3): 155-161 JUN 2011

Although the scientific research surrounding pharmacogenomics (PGx) has been relatively plentiful, the ethical research concerning this discipline has developed rather conservatively. Following investigation of the ethical , legal and social issues (ELSI) of PGx research, as well as consulting with key stakeholders, we identified six outstanding ethical issues raised by the informed consent process in PGx research: (1) scope of consent; (2) consent to ‘add-on’ studies; (3) protection of personal information; (4) commercialization; (5) data sharing; and (6) potential risks stemming from population-based research. In discussing these six areas as well as offering specific considerations, this article offers a solid base from which future practical guidelines for informed consent in PGx research can be constructed. As such, this effort works toward filling the ELSI gap and provides ethical support to the numerous PGx projects undertaken by researchers every year.

Smerecnik, CMR; Mesters, I; de Vries, H; de Vries, N. An Empirical Test of the Materialist Framework for Understanding the General Population’s Reaction to Nonpersonalized Genetic Health Messages. JOURNAL OF HEALTH COMMUNICATION 16 (5): 550-562 2011

Genetic health messages are increasingly prevalent in our society . The materialist framework of laypeople’s genetic knowledge may provide a good basis for understanding the effects of such messages on preventive behavior and related health cognitions. This study provides an empirical test of the predictions of this framework. We presented 929 participants who were aware or unaware of the existence of genetic risk factors for salt sensitivity with either a genetic health message or a general health message about salt sensitivity. Baseline, immediate follow-up, 1-month follow-up, and 6-month follow-up questionnaires assessed risk perception, intention, and salt consumption. Compared with the general health message, previously unaware participants reported lower susceptibility to, and lower severity of, salt sensitivity and lower intentions to restrict salt intake immediately after reading the genetic health message, but not at the 1- and 6-month follow-ups. No such effects were observed for previously aware participants. In addition, the authors observed no effect of health message type on self-reported salt consumption. The authors’ findings support the validity of the materialist framework for understanding laypeople’s knowledge of genetics . On the basis of the results, several implications were deduced for public education of genetics .

Brown, WM. The Parental Antagonism Theory of Language Evolution: Preliminary Evidence for the Proposal. HUMAN BIOLOGY 83 (2): 213-245 Sp. Iss. SI APR 2011

Language-as with most communication systems-likely evolved by means of natural selection. Accounts for the genetical selection of language can usually be divided into two scenarios, either of which used in isolation of the other appear insufficient to explain the phenomena: (1) there are group benefits from communicating, and (2) there are individual benefits from being a better communicator. In contrast, it is hypothesized that language phenotypes emerged during a coevolutionary struggle between parental genomes via genomic imprinting, which is differential gene expression depending on parental origin of the genetic element. It is hypothesized that relatedness asymmetries differentially selected for patrigene-caused language phenotypes to extract resources from mother (early in development) and matrigene-caused language phenotypes to influence degree of cooperativeness among asymmetric kin (later in development). This paper reports that imprinted genes have a high frequency of involvement in language phenotypes (similar to 36%), considering their presumed rarity in the human genome (similar to 2%). For example, two well-studied genes associated with language impairments (FOXP2 and UBE3A) exhibit parent-of-origin effects. Specifically, FOXP2 is putatively paternally expressed, whereas UBE3A is a maternally expressed imprinted gene. It is also hypothesized that the more unique and cooperative aspects of human language emerged to the benefit of matrilineal inclusive fitness. Consistent with this perspective, it is reported here that the X-chromosome has higher involvement in loci that have associations with language than would be expected by chance. It is also reported, for the first time, that human and chimpanzee maternally expressed overlapping imprinted genes exhibit greater evolutionary divergence (in terms of the degree of overlapping transcripts) than paternally expressed overlapping imprinted genes. Finally, an analysis of global language patterns reveals that paternally but not maternally silenced Alu elements are positively correlated with language diversity. Furthermore, there is a much higher than expected frequency of Alu elements inserted into the protein-coding machinery of imprinted and X-chromosomal language loci compared with nonimprinted language loci. Taken together these findings provide some support for parental antagonism theory. Unlike previous theories for language evolution, parental antagonism theory generates testable predictions at the proximate (e. g., neurocognitive areas important for social transmission and language capacities), ontogenetic (e. g., the function of language at different points of development), ultimate (e. g., inclusive fitness), and phylogenetic levels (e. g., the spread of maternally derived brain components in mammals, particularly in the hominin lineage), thus making human capacities for culture more tractable than previously thought.

Ronald, P. Plant Genetics , Sustainable Agriculture and Global Food Security. GENETICS 188 (1): 11-20 MAY 2011

The United States and the world face serious societal challenges in the areas of food, environment, energy, and health. Historically, advances in plant genetics have provided new knowledge and technologies needed to address these challenges. Plant genetics remains a key component of global food security, peace, and prosperity for the foreseeable future. Millions of lives depend upon the extent to which crop genetic improvement can keep pace with the growing global population, changing climate, and shrinking environmental resources. While there is still much to be learned about the biology of plant-environment interactions, the fundamental technologies of plant genetic improvement, including crop genetic engineering, are in place, and are expected to play crucial roles in meeting the chronic demands of global food security. However, genetically improved seed is only part of the solution. Such seed must be integrated into ecologically based farming systems and evaluated in light of their environmental, economic, and social impacts-the three pillars of sustainable agriculture. In this review, I describe some lessons learned, over the last decade, of how genetically engineered crops have been integrated into agricultural practices around the world and discuss their current and future contribution to sustainable agricultural systems.

Mukolo, A; Heflinger, CA. Factors Associated with Attributions About Child Health Conditions and Social Distance Preference. COMMUNITY MENTAL HEALTH JOURNAL 47 (3): 286-299 JUN 2011

In order to better understand factors that account for the emergence and persistence of negative attitudes towards mental health problems, attributions about and stigma towards children’s mental and physical illnesses were examined using National Stigma Study-Children data. Parent blame attributions were most strongly associated with attention deficit disorder, environmental causes with depression, and biology with asthma. Parent blame was more frequent for mental than physical health conditions. Child blame was associated with higher preferred social distance from the child, but no clear links were observed between social distance and attributions about genetic /biology, environment, or parent blame. Rurality was not significantly associated with attributions or social distance preference. Higher educational achievement was associated with increased endorsement of environmental stress factors and reduced odds of child blaming. The general public holds complex explanatory models of and nuanced responses to children’s mental disorders that need further investigation, including effects on parents’ and children’s help-seeking.

Hatemi, PK; Dawes, CT; Frost-Keller, A; Settle, JE; Verhulst, B. Integrating Social Science and Genetics : News from the Political Front. BIODEMOGRAPHY AND SOCIAL BIOLOGY 57 (1): 67-87 Sp. Iss. SI 2011

There has been growing interest in the use of genetic models to expand the understanding of political preferences, attitudes, and behaviors. Researchers in the social sciences have begun incorporating these models and have revealed that genetic differences account for individual differences in political beliefs, behaviors, and responses to the political environment. The first Integrating Genetics and the Social Sciences Conference, held at Boulder, Colorado in May of 2010, brought together these researchers. As a result, we jointly review the last 5 years of research in this area. In doing so, we explicate the methods, findings, and limitations of behavior genetic approaches, including twin designs, association studies, and genome-wide analyses, in their application toward exploring political preferences.

Kohler, HP; Behrman, JR; Schnittker, J. Social Science Methods for Twins Data: Integrating Causality, Endowments, and Heritability. BIODEMOGRAPHY AND SOCIAL BIOLOGY 57 (1): 88-141 Sp. Iss. SI 2011

Twins have been extensively used in economics, sociology, and behavioral genetics to investigate the role of genetic endowments on a broad range of social , demographic, and economic outcomes. However, the focus in these literatures has been distinct: The economic literature has been primarily concerned with the need to control for unobserved endowmentsincluding as an important subset, genetic endowmentsin analyses that attempt to establish the impact of one variable, often schooling, on a variety of economic, demographic, and health outcomes. Behavioral genetic analyses have mostly been concerned with decomposing the variation in the outcomes of interest into genetic , shared environmental, and non-shared environmental components, with recent multivariate analyses investigating the contributions of genes and the environment to the correlation and causation between variables. Despite the fact that twins studies and the recognition of the role of endowments are central to both of these literatures, they have mostly evolved independently. In this paper, we develop formally the relationship between the economic and behavioral genetic approaches to the analyses of twins, and we develop an integrative approach that combines the identification of causal effects, which dominates the economic literature, with the decomposition of variances and covariances into genetic and environmental factors that are the primary goal of behavioral genetic approaches. We apply this integrative ACE- approach to an illustrative investigation of the impact of schooling on several demographic outcomes such as fertility and nuptiality and health.

Mitchell, C; Notterman, D; Brooks-Gunn, J; Hobcraft, J; Garfinkel, I; Jaeger, K; Kotenko, I; McLanahan, S. Role of mother’s genes and environment in postpartum depression. PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA 108 (20): 8189-8193 MAY 17 2011

Most studies of human molecular genetics and social environment interactions on health have relied heavily on the classic diathesisstress model that treats genetic variations and environments as being either “risky” or “protective.” The biological susceptibility model posits that some individuals have greater genetic reactivity to stress, leading to worse outcomes in poor environments, but better outcomes in rich environments. Using a nontruncated measure of a chronic environmental stressor-socioeconomic status-measured by education, and two polymorphisms (5-HTTLPR and STin2 VNTR) of the serotonin transporter gene (5-HTT), we find strong evidence that some women are genetically more reactive to the environment, resulting in a crossover of risks of postpartum depression for the most reactive groups. We discuss how our approach and findings provide a framework for understanding some of the confusion in the gene-environment interaction literature on stress, 5-HTT, and depression.

Wilson, JL; Ferguson, GM; Thorn, JM. Genetic Testing Likelihood: The Impact of Abortion Views and Quality of Life Information on Women’s Decisions. JOURNAL OF GENETIC COUNSELING 20 (2): 143-156 APR 2011

Little is known about factors predicting the likelihood of choosing genetic testing in college aged women versus older women, including knowledge of quality of life (QOL) associated with a disorder. Using vignettes with female college students (Experiment 1: n=257, mean age=19.70 yrs) and female faculty/staff/alumni (Experiment 2: n(nulliparous)=83, mean age=30.20 yrs; n(mothers)=53, mean age=33.77 yrs), we examined the contribution of multiple factors to predicting genetic testing likelihood for cystic fibrosis. We investigated malleable situational factors (style of genetic risk presentation and providing QOL information including physical and social aspects) and stable dispositional factors (abortion views). Parity (i.e., prior births) was more influential in women’s genetic testing likelihood than was age. Greater acceptability of abortion for oneself and self-assessed knowledge following QOL information were predictors of higher testing likelihood for college students. Greater acceptability of abortion for another person was a predictor for nulliparous women. Abortion views moderated the effect of predictors for nulliparous women and mothers. Findings encourage genetic counselors to utilize QOL information to promote informed decision making through genetic testing.

Griffith, GM; Hastings, RP; Nash, S; Petalas, M; Oliver, C; Howlin, P; Moss, J; Petty, J; Tunnicliffe, P. “You Have to Sit and Explain it All, and Explain Yourself.” Mothers’ Experiences of Support Services for Their Offspring with a Rare Genetic Intellectual Disability Syndrome. JOURNAL OF GENETIC COUNSELING 20 (2): 165-177 APR 2011

The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring’s syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes emerged from the analysis: (i) The rarity of their offspring’s syndrome, (ii) Uneven medical and social care service provision, (iii) The inertia of social care services, and (iv) Mothers as advocates. Mothers felt that the rareness of their offspring’s syndrome did not affect experiences with social care services, but did affect access to medical services and some aspects of day-to-day living. Accessing appropriate social care services was reported to be a lengthy and complex process. These data may help inform care service providers about how best to support adults with rare genetic syndromes and their families.

Rogers, JC; Taylor, ATS. Teaching About Genetic Testing Issues in the Undergraduate Classroom: A Case Study. JOURNAL OF GENETIC COUNSELING 20 (3): 231-240 JUN 2011

Educating undergraduates about current genetic testing and genomics can involve novel and creative teaching practices. The higher education literature describes numerous pedagogical approaches in the laboratory designed to engage science and liberal arts students. Often these experiences involve students analyzing their own genes for various polymorphisms, some of which are associated with disease states such as an increased risk for developing cancer. While the literature acknowledges possible ethical ramifications of such laboratory exercises, authors do not present recommendations or rubrics for evaluating whether or not the testing is, in fact, ethical . In response, we developed a laboratory investigation and discussion which allowed undergraduate science students to explore current DNA manipulation techniques to isolate their p53 gene, followed by a dialogue probing the ethical implications of examining their sample for various polymorphisms. Students never conducted genotyping on their samples because of ethical concerns, so the discussion served to replace actual genetic testing in the class. A basic scientist led the laboratory portion of the assignment. A genetic counselor facilitated the discussion, which centered around existing ethical guidelines for clinical genetic testing and possible challenges of human genotyping outside the medical setting. In their final papers, students demonstrated an understanding of the practice guidelines established by the genetics community and acknowledged the ethical considerations inherent in p53 genotyping. Given the burgeoning market for personalized medicine, teaching undergraduates about the psychosocial and ethical dimensions of human gene testing seems important and timely, and introduces an additional role genetic counselors can play in educating consumers about genomics.

Marino, TC; Arminan, RR; Cedeno, HJ; Mesa, JML; Zaldivar, YG; Rodriguez, RA; Santos, MV; Mederos, LEA; Herrera, MP; Perez, LV. Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias. JOURNAL OF GENETIC COUNSELING 20 (3): 241-248 JUN 2011

Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.

Rolnick, SJ; Rahm, AK; Jackson, JM; Nekhlyudov, L; Goddard, KAB; Field, T; McCarty, C; Nakasato, C; Roblin, D; Anderson, CP; Valdez, R. Barriers in Identification and Referral to Genetic Counseling for Familial Cancer Risk: The Perspective of Genetic Service Providers. JOURNAL OF GENETIC COUNSELING 20 (3): 314-322 JUN 2011

The purpose of this study was to obtain genetic counselors’ perspectives about the identification of appropriate patients and barriers to referral of high-risk patients for cancer genetic counseling services. Genetic service providers from eight integrated health systems were surveyed. Data analysis included descriptive statistics. Twenty-eight of 40 potential participants responded (70%). Referrals for familial cancer risk assessment overwhelmingly came from providers (89%); only 10% were self-referrals. Use of guidelines to assist providers with referral was reported by 46% of the respondents. Genetic service providers perceived patient barriers to seeking genetic counseling after referral included: risk evaluation viewed as a non-priority (72%), concerns about impact on insurability (52%), distance to appointments (48%), lack of insurance (44%), lack of patient/provider knowledge about the value of genetic counseling (36%), discouragement by family members (28%), and fear (20%). The best approaches suggested by respondents to increase appropriate referrals were attending meetings and giving presentations to oncologists, surgeons, primary care and gynecologists. The genetic service providers reported several barriers to the referral and use of genetic counseling. This finding is consistent with current literature from the providers’ perspective. Our survey adds the genetic service providers’ perspective and identifies areas of opportunity for further research and intervention as few of the perceived barriers are being addressed through current educational efforts.

Aarden, E; Van Hoyweghen, I; Horstman, K. Constructing access in predictive medicine. Comparing classification for hereditary breast cancer risks in England, Germany and the Netherlands. SOCIAL SCIENCE & MEDICINE 72 (4): 553-559 FEB 2011

In the first decade of the twenty-first century, predictive forms of medicine, largely associated with genetics , have become increasingly prominent. This has given rise to questions about the social consequences of this development, for example with regard to the distribution of health care access. Drawing on qualitative interviews with clinic staff and public officials and on document analyses, we analyse how access to risk assessment and monitoring for hereditary breast cancer predispositions in Germany, the Netherlands and England is produced through the interaction of risk classification and health care organisation. For each of the three countries, we show how particular combinations of genetic testing and family history data, classification of risks and allocation of monitoring services in practice contribute to specific forms of inclusion and exclusion. Thus, we show how risk assessment and monitoring in Germany attributes a large role to genetic testing; how family history information plays a large role in the Netherlands; and how regional differences in health care have a significant influence in England. On the basis of our case study, we argue that health care organisation is an important facet of the allocation of health care access, as it plays an important role in mediating the influence of risk assessment technologies and risk categories in health care access. We conclude that the allocation of risk assessment and monitoring in predictive medicine deserve more extensive political attention. (C) 2010 Elsevier Ltd. All rights reserved.

France, EF; Wyke, S; Ziebland, S; Entwistle, VA; Hunt, K. How personal experiences feature in women’s accounts of use of information for decisions about antenatal diagnostic testing for foetal abnormality. SOCIAL SCIENCE & MEDICINE 72 (5): 755-762 MAR 2011

There has been a striking growth in the availability of health-related information based on personal experience in recent years and internet users are often drawn towards other people’s stories about their health. Accounts of other people’s experiences might convey social and emotional information that is not otherwise available but little is known about how it is used or the implications of its use in practice. This paper examines how people refer to information about other people’s experiences when accounting for decisions about antenatal diagnostic testing for foetal abnormality. We conducted a secondary analysis of 37 qualitative interviews undertaken across the UK with 36 women and nine of their male partners (eight couples were interviewed together) who talked about diagnostic testing for foetal abnormality in 55 pregnancies. When describing their decisions, respondents referred to examples of knowledge gleaned from their own and other individuals’ experiences as well as information based on biomedical or clinical-epidemiological research (usually about the probabilities of having a child affected by health problems or the probability of diagnostic tests causing miscarriage). Both forms of knowledge were employed in people’s accounts to illustrate the legitimacy and internal coherence of decisions taken. The analysis demonstrates the personally idiosyncratic ways that people reflect on and incorporate different types of information to add meaning to abstract ideas about risk, to imagine the consequences for their own lives and to help them to make sense of the decisions they faced. Crown Copyright (C) 2010 Published by Elsevier Ltd. All rights reserved.

Scambler, S; Newton, P. Capital transactions, disruptions and the emergence of personal capital in a lifeworld under attack. SOCIAL THEORY & HEALTH 9 (2): 130-146 MAY 2011

Focusing on the experiences of parents caring for their children with Batten disease this article gives an overview of Batten disease as an exemplar of a long-term disabling, degenerative condition characterised by an omnipresence of biological pathology and consequence – represented, adumbrated and organised primarily through biomedical expertise. The utility of Bourdieu’s concepts of field, capital and habitus is explicated and illustrated using data from an in-depth qualitative study on Batten disease. Through applying Bourdieusian constructs, we argue that it is possible to heuristically describe a Batten field militated by the biology, with forms of capital that accord to, and represent, biomedical interest and expertise. However, we illustrate a new form of capital that develops – personal capital – borne from systematic exclusion from existing forms of capital, and the sequestration of available capital in the field by expert systems that leave parents with an acutely aware, reflexive stance rooted in responding to ‘everyday’ lifeworld. This acts as a sounding board producing new personal systems of valuation seen here as ‘personal capital’. This personal capital allows the person to reject, harness, filter and ‘trans-value’ other forms of capital in light of their immediate circumstances, and personal pursuits in the lifeworld.

Petrini, C. Guidelines for genetic counselling for neurological diseases: ethical issues. MINERVA MEDICA 102 (2): 149-159 APR 2011

Genetic testing are available for a long list of neurodegenerative diseases. The most authoritative scientific and health-care institutions agree that dementia is going to be one of the major problems and most challenging priorities for public health care in upcoming years. Genetic counselling is a complex field. Technically speaking, the term “guideline” has a very specific meaning. Several guidelines for genetic testing for neurology diseases are available. The article summarizes, from an ethical perspective, the main guidelines for genetic counselling in the neurological filed and suggests four main conclusions: 1) guidelines contain a superabundance of indications for genetic counselling for persons who are potentially at risk of developing neurological disorders, but perhaps are lacking with regard to the question of genetic counselling for persons already affected by mental disorders; 2) there is a risk that genetic testing abuses for disorders of neuro! logical complexity will lead to confusion; 3) there is a risk that confusion will derive not only from the overuse of genetic testing, but also from the proliferation of guidelines; 4) codes and guidelines do not eliminate the need for ethical awareness in interpreting them.

Kollek, R; Petersen, I. Disclosure of individual research results in clinico- genomic trials: challenges, classification and criteria for decision-making. JOURNAL OF MEDICAL ETHICS 37 (5): 271-275 MAY 2011

While an ethical obligation to report findings of clinical research to trial participants is increasingly recognised, the academic debate is often vague about what kinds of data should be fed back and how such a process should be organised. In this article, we present a classification of different actors, processes and data involved in the feedback of research results pertaining to an individual. In a second step, we reflect on circumstances requiring further ethical consideration. In regard to a concrete research setting-the one of clinico- genomic research-we discuss what kinds of difficulties have to be faced when returning individual research results to trial participants. In a last step, we elaborate on a stepwise model to trigger the individual feedback process. Hence, this paper gives guidance on how to feedback individual research results in a specific research setting and responds at the same time to new challenges in the debate on the duty to return individual research findings.

Bosslet, GT. Parental procreative obligation and the categorisation of disease: the case of cystic fibrosis. JOURNAL OF MEDICAL ETHICS 37 (5): 280-284 MAY 2011

The advent of prenatal genetic diagnosis has sparked debates among ethicists and philosophers regarding parental responsibility towards potential offspring. Some have attempted to place moral obligations on parents to not bring about children with certain diseases in order to prevent harm to such children. There has been no rigorous evaluation of cystic fibrosis in this context. This paper will demonstrate cystic fibrosis to have unique properties that make it difficult to categorise among other diseases with the goal of promulgating a reproductive rule. Once this is established, it will be demonstrated that procreative rules that appeal to future health are inadequate in the era of advancing genetic knowledge. Utilising a specification of Joel Feinberg’s ‘open future’ concept outlined by Matteo Mameli, it will offer an analysis of parental obligation that does not constrain parents of potential children with cystic fibrosis with a moral obligation not to bring them about.

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