Postgraduate Forum on Genetics and Society Regional Meeting –

“Governance and Intellectual Property of Biotechnology: Developed and Developing Countries Perspectives”

DATE: 2^nd March 2012 

VENUE: The Moot Court, School of Law, University of Sheffield

IMPORTANT DATES:

- Abstract Submission Deadline (papers AND posters): 8^th February

- Registration:  6^th – 24^th February

- Conference Date: 2^nd March, 2012

Since its inception in 1998, the Postgraduate Forum in Genetics and Society has sought to provide a supportive environment for postgraduate students involved in Life Sciences, Ethics and Society. Funded by the ESRC through the Genomics Forum, the online community and regional meetings give postgraduates the opportunity to meet and network, and to present their research in a friendly and supportive atmosphere.

We cordially invite contributions for the first PFGS meeting for 2012, to be held at the University of Sheffield on the theme of “Governance and Intellectual Property of Biotechnology: Developed and Developing Countries Perspectives”. Further meetings will follow throughout the spring and summer.

Governance and IP are central to the progress of biotechnology in both developed and developing countries. We welcome offers of papers from all disciplinary areas covered by the meeting. Possible topics include, but are not limited to: recent trends in IP and Governance of Biotech including technology transfer in developing countries, Biobank initiatives, patenting biological matter and scientists’ use of patent information. As an alternative to a paper, you may propose to present a poster of your research.

All postgraduate students registered at a British university are eligible to participate. The conference is free, and we offer a limited number of travel bursaries, up to advance purchase price for rail or coach fare within the UK.

Proposals for paper and posters should include the name, affiliation, and contact details (including email address) for authors, as well as a brief (max. 200 words) abstract and title. Proposals should be sent to s.beedham[at]shef.ac.uk by 8^th February 2012. Successful applicants will be notified by 10^th February 2012.

Please do not hesitate to get in contact with the organising team if you have any questions by emailing s.beedham[at]shef.ac.uk. For more information about joining PFGS, visit our blog at http://pfgs.wordpress.com or email pfgsmtgs[at]gmail.com.

We will post again with information about how to register for the event. In the meantime good luck with your proposals and we look forward to meeting many of you in March!

Best wishes,

Anna Hescott

Carlos Conde

Jessica Bell

Check back soon!

Regional meetings are designed as informal events for postgraduate and postdoctoral researchers to come together in a small, supportive environment to exchange ideas, generate new questions, and develop connections between postgraduate and early career researchers in the life, health and social sciences.

Meetings may be focussed on any topic broadly related to genetics and society or methodologies used to research this area. Recent topics have included Genetics and Behaviour, PGD, Interdisciplinarity, Interviews and Lab Ethnography. Events should be of interest to a wide range of disciplines. The format can be anything from an informal presentation of student papers to a Masterclass Lecture, film with discussion, seminar on prepared readings or methodology workshops. You can find some of the previous events on our History page, which is still in the making.

Thursday 21st July 2011, 2:00pm-4:30pm Followed by a drinks reception

Charles Darwin Conference Centre, 12 Roger Street, London WC1N 2JU PDF invite can be downloaded here: http://tiny.cc/5kfhk SPEAKERS INCLUDE:

• PROFESSOR BRENDA ALMOND, Emeritus Professor of Moral and Social Philosophy at the University of Hull and former member of the Human Genetics Commission.
• Dr. ADELE LANGLOIS, School of Social Sciences, University of Lincoln speaking on “The UNESCO Bioethics Programme: a forum for progress in the regulation of genetics?”
• Dr. HELEN WALLACE, Director, GeneWatch
• STEVE BATES, Genzyme
• Dr. DAVID NAPIER, Centre for Applied Global Citizenship, University College London

This is the fourth and final symposium of BioCentre’s 2010-11 series, entitled “Revolution, Regulation and Responsibilities: Technology and democracy in the 21st Century” and is co-hosted with The Biochemical Society. The sequencing of the human genome ushered in a revolution in terms of our understanding of health and disease. The application of genetic and genomic information in helping to form diagnosis, prognosis and treatment promises to offer more specific and efficient healthcare provision for the patient, giving rise to what many refer to as ‘personalized medicine’. With this ‘new medicine’ has come a consumerist approach to healthcare and the new technologies available have been seized upon by businesses offering genetic profiling and online medicine services. Already patients have easy access to genetic tests run by various labs and over the counter (“direct to consumer” or DTC kits) without being properly informed as to the risks involved and the interpretation of results. Likewise, with increasing amounts of personal genetic information being generated for both research and healthcare, concerns have also been raised concerning personal privacy, data security and the potential for discrimination. This symposium will therefore seek to appraise current developments and consider the current legal and regulatory position for their use before taking time to reflect and assess the future impact on society.

*** Please feel free to circulate details amongst colleagues and contacts who may also be interested in attending.

*** RSVPs are required. Please include your name and the organisation that you represent in your response. There is no charge for the event. To RSVP: e: info@bioethics.ac.uk | t: 0207 227 4706 | w: www.bioethics.ac.uk

Main Purpose of Job: To contribute to the development of research, thematic programmes and research-based events (such as expert seminars) as part of a team, focusing on key aspects of the relationship between genomics and society.

Context of the Job: The Genomics Policy and Research Forum is funded by the Economic and Social Research Council (ESRC). It provides a bridge between social science and policy makers in the UK and abroad and also seeks to develop links between social scientists and scientists working on genomics. This includes areas as diverse as plant and animal genetics, embryonic stem cell research, and associated health applications. This appointment will play a central role in shaping the Forum’s research activities over the final period of the Forum’s ESRC funding.

The post is available for up to 17 months from 1st September. Secondment from an existing position in government, business, or a civil society will be considered.

The post is full-time (35 hours) but applications for 28 hours per week will also be considered.

Closing date 1st August 2011 Salary Scale: £29,972 – £35,788 For further information please visit The University of Edinburgh jobs website http://www.jobs.ed.ac.uk/vacancies/index.cfm?fuseaction=vacancies.detail&vacancy_ref=3014552&go=GO

Stuart

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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.

The Working Party is interested in the way society and policy makers respond to new biotechnologies and how benefits from these technologies can be secured in an ethically appropriate manner. This issue will be considered in light of both current examples of emerging biotechnologies, such as synthetic biology and nanotechnology, and older cases, such as genetically modified crops and assisted reproduction technologies.

All responses will be considered carefully by the Working Party. We aim to publish our final report, including recommendations to policy makers, in autumn 2012.

The deadline for responses is 15 June 2011.

http://www.nuffieldbioethics.org/emerging-biotechnologies/emerging-biotechnologies-consultation-open

Background: Genome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania. Discussion: We explore ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations. Summary: Many ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects.

Li, C. Personalized medicine – the promised land: are we there yet? CLINICAL GENETICS 79 (5): 403-412 MAY 2011

The delivery of personalized genomic medicine (refer <link rid=”t1″>Table 1 for a comparison of genomic vs genetic medicine and box 1 for glossary) hinges on obtaining personal genomic data through genome-wide association studies (GWAS) or whole-genome sequencing. After the completion of the human genome project (see box 2 for human genome projects and its derivative projects) in 2003, there appeared to be a period of euphoric optimism that as soon as the cost of sequencing the whole human genome could be brought down to an affordable range, the promise of personalized medicine would become a reality. However, inasmuch as the miraculous technological advancements are making whole-genome data acquisition an inexpensive reality, we are also starting to appreciate that making sense of the enormous amount of genomic data is a far bigger hurdle. Issues, both scientific and ethico -legal, will have to be addressed as genomic data are been pushed for clinical and direct-to-consumer utilization.

Navon, D. Genomic designation: How genetics can delineate new, phenotypically diffuse medical categories. SOCIAL STUDIES OF SCIENCE 41 (2): 203-226 APR 2011

This paper reports and discusses ‘ genomic designation’ as a way of classifying people. In genomic designation the object of biomedical analysis – and the concomitant medical category that is subject to scientific, clinical, and social action – is delineated on a genomic basis, while the phenotype is decentralized and tabulated post factum. Unlike prominent sociological concepts such as biosociality or geneticization , where genetic proclivities for or explanations of phenotypic categories affect social processes, genomic designation treats characteristics of the genome as the essential referent of new categories of illness. I outline the relevant sociological literature and the shift to what Nikolas Rose has called the ‘molecular gaze’ before explicating the concept of genomic designation and its half-century history. I use 22q13 Deletion/Phelan-McDermid syndrome as an example of genomic designation: investigations into the deletion of genetic material at site q13 on the 22nd chromosome preceded and made practicable the delineation of a syndrome more than a decade later, even though the associated phenotype is not distinct enough for diagnosis. Finally, I discuss the implications of this turn to ‘rigidly designate’ kinds of people according to observations made at the level of the genome and outline directions for future research.

Gollust, SE; Lantz, PM; Ubel, PA. Images of Illness: How Causal Claims and Racial Associations Influence Public Preferences toward Diabetes Research Spending. JOURNAL OF HEALTH POLITICS POLICY AND LAW 35 (6): 921-959 DEC 2010

Despite the salience of health disparities in media and policy discourse, little previous research has investigated if imagery associating an illness with a certain racial group influences public perceptions. This study evaluated the influence of the media’s presentation of the causes of type 2 diabetes and its implicit racial associations on attitudes toward people with diabetes and preferences toward research spending. Survey participants who viewed an article on genetic causation or social determinants of diabetes were more likely to support increased government spending on research than those viewing an article with no causal language, while participants viewing an article on behavioral choices were more likely to attribute negative stereotypes to people with diabetes. Participants who viewed a photo of a black woman accompanying the article were less likely to endorse negative stereotypes than those viewing a photo of a white woman, but those who viewed a photo of a glucose-testing device expressed the lowest negative stereotypes. The effect of social determinants language was significantly different for blacks and whites, lowering stereotypes only among blacks. Emphasizing the behavioral causes of diabetes, as is common in media coverage, may perpetuate negative stereotypes. While drawing attention to the social determinants that shape these behaviors could mitigate stereotypes, this strategy is unlikely to influence the public uniformly.

Douglas, C; Goulding, R; Farris, L; Atkinson-Grosjean, J. Socio-Cultural Characteristics of Usability of Bioinformatics Databases and Tools. INTERDISCIPLINARY SCIENCE REVIEWS 36 (1): 55-71 MAR 2011

With the increasing importance of the usability of bioinformatics systems and databases, this paper examines the socio-cultural characteristics that may affect the usability of such tools. We understand socio-cultural characteristics to be the norms, values, and beliefs that mediate the interactions between the structures and institutions of science (i.e. disciplines, universities, funding organizations), and its practitioners. These factors are not necessarily distinct from the technical features of a database, but do nevertheless affect the context in which one chooses to use a particular set of tools. We have developed three socio-cultural characteristics of bioinformatics database usability: accessibility, utility, and portability. By ‘accessibility’, we mean the social and cultural attributes that make resources open and available for use, such as intellectual property arrangements or institutional reputation and prestige. ‘Utility’ in this context means the perceived usefulness of a database, which can be determined by non-technical matters such as trust and taste. ‘Portability’ refers to the social aspects of criteria such as maintenance funding, and input and storing standards that allow a database to move through space and time. In this article, we call for a social science research programme on these – and other – socio-cultural characteristics to usability. We invite researchers in human-computer interaction, bioinformatics, usability engineering and other areas to extend their work to examine the social contexts in which these systems are used, and the sociocultural factors that mediate their use. Such a research programme would increase the multidisciplinary nature of these emergent fields, and help address the complexities of work in the post- genomic era.

Arribas-Ayllon, M; Featherstone, K; Atkinson, P. The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect. SOCIAL THEORY & HEALTH 9 (1): 3-23 FEB 2011

Some have argued that advances in molecular genetics will lead to the geneticisation of identity and the subsequent reduction of the human subject to their genetic complement. In this article, we advance the more cautious argument that far from reducing subjectivity to genetics , genetic knowledge is incorporated and resisted in complex ways. We draw our analysis from a sample of individuals who have attended a clinical genetic service in South Wales. In-depth qualitative interviews (n = 61) were conducted with family members to explore the ways in which genetic risk foregrounds patterns of relatedness and responsibility. A surprisingly high incidence of non-disclosure of risk was reported in our study. Families provided complex explanations of guilt, blame, character and surveillance to justify deferring or delaying disclosure of risk. We explain these findings in terms of conditions immanent to the materiality of everyday experience. Our account of ‘practical ethics ‘ combines discursive and pre-discursive explanations to explore the role of inheritance, kinship and affect in the modulation of genetic responsibility.

Anderson, C; Stackhouse, R; Shaw, A; Iredale, R. The National DNA Database on trial: engaging young people in South Wales with genetics . PUBLIC UNDERSTANDING OF SCIENCE 20 (2): 146-162 MAR 2011

While there has been research conducted on public views about ethical and social aspects of the National DNA Database (NDNAD), there is little which focuses on views of young people, in particular those whose details are held on the NDNAD. We describe an engagement activity developed in South Wales to engage young offenders with ethical and social issues surrounding the NDNAD – a Mock Trial – and how we facilitated the presentation of their views to policy makers. We discuss the successes and challenges we encountered with engaging young offenders, decisions that the young people reached about possible future policies for the NDNAD at the Mock Trial, and their contribution to the decision-making process.

Hens, K; Nys, H; Cassiman, JJ; Dierickx, K. The Storage and Use of Biological Tissue Samples from Minors for Research: A Focus Group Study. PUBLIC HEALTH GENOMICS 14 (2): 68-76 2011

Genetic research on pediatric stored tissue samples raises specific ethical questions that differ from those raised when adults are the donors. To investigate opinions on this matter, we conducted 10 focus group discussions. Five focus groups were conducted with adult participants and 5 had teenage participants between 15 and 19 years old. The discussions were analyzed with NVIVO 8 (qualitative research software). We found the following recurrent categories: the requirement that research should not pose any burden on children and that it should benefit other children, the trust people had in the role of parents, the need for information and the growth towards autonomy. Both the adults and teenagers we interviewed thought that the inclusion of tissue samples from minors in research had ethical implications. A major concern was that nontherapeutic research would pose no extra burden on children, which would assume the use of nonintrusive methods of gathering samples and the use of samples that were gathered in a diagnostic context. Participants, however, also understood the necessity of such research. The overall impression was that parents would be the best persons to make decisions on behalf of a small child and that the same parents would engage their children in the decision-making when they grew older. People thought that there was a duty to recontact minors when they reached the age of competence but on a best-effort basis.

Alford, SH; McBride, CM; Reid, RJ; Larson, EB; Baxevanis, AD; Brody, LC. Participation in Genetic Testing Research Varies by Social Group. PUBLIC HEALTH GENOMICS 14 (2): 85-93 2011

Background: Advances in technology have made individual access to personal genetic information foreseeable in the near future. Policy makers and the media forecast that the ready availability of personal genetic profiles would benefit both the individual and the health care system by improving outcomes and decreasing cost. However, there is a significant gap between having access to genetic data and either wanting or understanding the information it provides. Objective: Our primary aim was to evaluate, using a population-based sample of healthy adults, whether gender, race and education status influences interest and participation in a multiplex genetic susceptibility test. Methods: Healthy, insured individuals, 25-40 years of age, were approached via a large, integrated health system in which primary and specialty care is available. Study participants were offered personalized genetic risk information on 8 common chronic health conditions. Social groups historic:ally known not to participate in genetic research (men, African Americans and those from lower education neighborhoods) were oversampled. We describe the recruitment outcomes and testing decisions of these social groups. Results: We found that even among those with access to health care, African Americans were less likely to participate in the multiplex genetic susceptibility test, while those from higher education neighborhoods were more likely to participate. Conclusions: Our results suggest that large social groups will likely be underrepresented in research in personalized genomics even when robust population-based recruitment strategies are employed. 

Wilmut, I; Wongtawan, T; Quigley, M; Sullivan, G. Biomedical and social contributions to sustainability. PHILOSOPHICAL TRANSACTIONS OF THE ROYAL SOCIETY A-MATHEMATICAL PHYSICAL AND ENGINEERING SCIENCES 369 (1942): 1730-1747 MAY 13 2011

Over the past two or three centuries, biomedical advances have provided methods to prevent and treat infectious diseases. These changes have greatly reduced human suffering and enhanced sustainability by allowing people to live longer and healthier lives. The challenge for the coming centuries will be to ensure that these longer, healthier lives are also more productive lives. We must build on the gains of the past by translating new discoveries in regenerative medicine into therapies for degenerative and genetic diseases. Stem cells may be used to identify drugs that prevent the development of symptoms or to replace cells that have either died or lost their physiological function. In the case of genetic diseases, it may be possible to correct the genetic error. While most conditions that might be treated in these ways are common to all communities, some are more prevalent in specific races. Provision of these and other benefits depends not only on attainment of the research objectives, but also upon our ability to make treatment opportunities available throughout both developed and developing communities. The long history of researching and treating infectious diseases shows that it may take many decades to reap the full benefit of the new biological understanding.

Wiesemann, C. Is there a right not to know one’s sex? The ethics of ‘gender verification’ in women’s sports competition. JOURNAL OF MEDICAL ETHICS 37 (4): 216-220 APR 2011

The paper discusses the current medical practice of ‘gender verification’ in sports from an ethical point of view. It takes the recent public discussion about 800 m runner Caster Semenya as a starting point. At the World Championships in Athletics 2009 in Berlin, Germany, Semenya was challenged by competitors as being a so called ‘sex impostor’. A medical examination to verify her sex ensued. The author analyses whether athletes like Semenya could claim a right not to know that is generally acknowledged in human genetics and enforced by international and national genetic privacy laws. The relevance of this right for genetic diagnosis in sports is discussed. To this end, the interests of the athlete concerned and of third parties are balanced according to the expected benefits and harms. Harm is documented in a number of cases and includes unjustified disqualification, severe sex and gender identity crisis, demeaning reactions, social isolation, depression and suicide. Benefits are dubious as most cases of intersex are considered irrelevant for sports competition. It has to be concluded that the benefits to be gained from ‘gender verification’ in sports via genetic testing do not outweigh the grave individual disadvantages. The current practice of athletic associations to largely ignore the right of competitors not to know does not comply with prevailing ethical provisions on the protection of sensitive personal data. Therefore, genetic ‘gender verification’ in sports should be abolished.

Richer, J; Ghebremichael, MS; Chudley, AE; Robinson, WM; Wilfond, BS; Solomon, MZ. Research use of leftover newborn bloodspots: Attitudes of Canadian geneticists regarding storage and informed consent requirements. GENETICS IN MEDICINE 13 (4): 305-313 APR 2011

Purpose: Leftover newborn spots can provide a powerful research tool as a population-wide DNA bank. Some provinces/states store them for more than 20 years; however, parents are usually not informed of the retention of leftover newborn spots. To examine the opinions of Canadian geneticists regarding permission for leftover newborn spots storage for research purposes and the associated risks, a web-based survey was distributed to all members of the Canadian College of Medical Geneticists with a valid e-mail address (n = 209) and completed by 78 respondents (37%). Results: The majority of respondents (73%) favored opt-out notification for retention of samples that would be held for longer than 2 years. For research on multifactorial conditions using leftover newborn spots originally banked without parental permission, geneticists favored different types of permission depending on the level of identifiable information attached to samples. Thirty-eight percent were concerned that information pamphlets that state that leftover newborn spots will be stored and may be “a source of DNA for research” would lead to a decreased participation in newborn screening. Twenty-eight percent believed that group stigma or family anxiety was likely to result from using nonidentified leftover newborn spots to study multifactorial conditions. Conclusion: The concerns of this knowledgeable cohort supports the critical importance of public engagement about both the potential risks and societal benefits associated with the use of leftover newborn spots in research as policy for leftover newborn spots is developed.

Hock, KT; Christensen, KD; Yashar, BM; Roberts, JS; Gollust, SE; Uhlmann, WR. Direct-to-consumer genetic testing: An assessment of genetic counselors’ knowledge and beliefs. GENETICS IN MEDICINE 13 (4): 325-332 APR 2011

Purpose: Direct-to-consumer genetic testing is a new means of obtaining genetic testing outside of a traditional clinical setting. This study assesses genetic counselors’ experience, knowledge, and beliefs regarding direct-to-consumer genetic testing for tests that would currently be offered in genetics clinics. Methods: Members of the National Society of Genetic Counselors completed a web-administered survey in February 2008. Results: Response rate was 36%; the final data analysis included 312 respondents. Eighty-three percent of respondents had two or fewer inquiries about direct-to-consumer genetic testing, and 14% had received requests for test interpretation or discussion. Respondents believed that genetic counselors have a professional obligation to be knowledgeable about direct-to-consumer genetic testing (55%) and interpret results (48%). Fifty-one percent of respondents thought genetic testing should be limited to a clinical setting; 56% agreed direct-to-consumer genetic testing is acceptable if genetic counseling is provided. More than 70% of respondents would definitely or possibly consider direct-to-consumer testing for patients who (1) have concerns about genetic discrimination, (2) want anonymous testing, or (3) have geographic constraints. Conclusions: Results indicate that genetic counselors have limited patient experiences with direct-to-consumer genetic testing and are cautiously considering if and under what circumstances this approach should be used. 

Chubak, B; Heald, B; Sharp, RR. Informed consent to microsatellite instability and immunohistochemistry screening for Lynch syndrome. GENETICS IN MEDICINE 13 (4): 356-360 APR 2011

Objective: Routine microsatellite instability and immunohistochemistry screening of colorectal cancers can assist in identifying a significant proportion of cancers attributable to Lynch syndrome. This article considers whether it is necessary to obtain patient informed consent for microsatellite instability and immunohistochemistry screening. Results: Although microsatellite instability screening examines genetic features of a tumor, it lacks several important characteristics that typically mandate formal informed consent to genetic testing. Microsatellite instability screening describes discrete tissue samples and does not provide information about the rest of the patient’s body or germline. In contrast, immunohistochemistry screening is a proteomic test that may reveal information about the patient’s germline. As such, immunohistochemistry screening can be viewed as similar to other forms of genetic testing, in which explicit patient consent is regarded as an ethical prerequisite. Conclusion: There is no ethical requirement to obtain explicit informed consent for microsatellite instability screening of colorectal tumor samples for Lynch syndrome. There is support for obtaining patient consent to immunohistochemistry testing, given its similarities with other genetic analyses for which informed consent is typically deemed necessary. Regardless of which screening test is used, it is important to prepare patients and their families for the possibility of a positive screening test.

Bodies of Thought: Fleshy Subjects, Embodied Minds, & Human Natures

9th-10th June 2011, Royal Society of Edinburgh

Confirmed Keynote Speakers:

Dr Christine Battersby (Reader Emerita in Philosophy, University of Warwick)

Professor Susan Oyama (Professor Emerita ( http://en.wikipedia.org/wiki/Emeritus ) in Psychology, John Jay College ( http://en.wikipedia.org/wiki/John_Jay_College ) and CUNY Graduate Center ( http://en.wikipedia.org/wiki/CUNY_Graduate_Center ), New York ( http://en.wikipedia.org/wiki/New_York ))

Professor Michael Wheeler (Professor of Philosophy, University of Stirling)

The aim of this event is to foster a dialogue between researchers in feminist philosophy working on debates around the body, and researchers in recent philosophy of the cognitive and biological sciences, particularly those with interests in embodied cognition and the extended mind.

For the full Conference Programme and to register, please go to: http://www.dundee.ac.uk/philosophy/events/ This conference is part of an RSE funded Research Network in the Arts and Humanities, based at the University of Dundee. For further information about the Network, Engendering Dialogue: Feminist Thought and Contemporary Debates in Art, Science and Education, please contact Dr Rachel Jones, Philosophy, School of Humanities, Dundee DD1 4HN, or email at: r.e.jones@dundee.ac.uk