BackgroundClinical ethical practice (CEP) is required for healthcare workers (HCWs) to improve health-care delivery. However, there are gaps between accepted ethical standards and CEP in Ethiopia. There have been limited studies conducted on CEP in the country. Therefore, this study aimed to determine the magnitude and associated factors of CEP among healthcare workers in healthcare facilities in Ethiopia.MethodFrom February to April 2021, a mixed-method study was conducted in 24 health facilities, combining quantitative and qualitative methods. Quantitative (survey questionnaire) and qualitative (...) (semi-structured interviews) data were collected. For quantitative and qualitative data analysis, Stata version 14 and Atlas.ti version 7 were utilized. Multiple logistic regression and thematic analysis for quantative and qualitative respectively used.ResultsFrom a total of 432 study participants, 407 HCWs were involved in the quantitative analysis, 36 participants were involved in five focus group discussions (FGDs), and eleven key informant interviews (KIIs) were involved in the qualitative analysis. The score of good CEP was 32.68%. Similarly, the scores of good knowledge and attitude were 33.50% and 25.31%, respectively. In the multiple logistic regression models, satisfaction with the current profession, availability of functional CECs, compassionate leaders, previously thought clinical ethics in pre-service education and good attitude were significant factors associated with CEP. Among these significant factors, knowledge, compassionate leaders, poor infrastructure, a conducive environment and positive attitudes were also determinants of CEP according to qualitative findings.ConclusionsThe CEP in health care services in Ethiopia is low. Satisfaction with the current profession, functional CECs, positive attitude, compassionate leaders and previously thought clinical ethics were significant factors associated with CEP. The Ministry of Health (MoH) should integrate interventions by considering CECs, compassionate leadership, and positive attitudes and enhance the knowledge of health professionals. Additionally, digitalization, intersectoral collaboration and institutionalization are important for promoting CEP. (shrink)

Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent. This brief overview suggests that, even though the organization and function of these two-sided (...) markets remain open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness. (shrink)

Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents (...) of the standard view must show that they are in fact necessary. We further argue that the similarities between genetic and nongenetic information have important implications for communicating risks during consent for health care and research. While patients and research participants need to be more aware of pervasive data‐sharing practices, consent forms are the wrong place to provide this education. Instead, health systems should engage with patients throughout patient care to educate them about data‐sharing practices. (shrink)

The storage and access of genetic testing results have unique considerations for medical records. Initially, genetic testing was limited to patients with single gene diseases. Genetic medicine and testing have expanded, as have concerns about appropriately handling genetic information. In this study, we surveyed the management of genetic information in general hospitals in Japan using a questionnaire on access restrictions. Our questions included whether any other medical information was managed in a unique way. We identified (...) 1037 hospitals designated for clinical training located throughout Japan and received responses from 258 hospitals, and 191 reported that they handle genetic information and results of genetic tests. Of the 191 hospitals that handle genetic information, 112 hospitals implement access restrictions to genetic information. Seventy-one hospitals, one of which uses paper medical records rather than electrical medical records, do not enforce access restrictions. For eight hospitals, it was not known whether access restrictions were enforced or not. The responses from these hospitals indicated that access restrictions and storage methods varied across institution type (e.g., general vs. university hospitals), institution size, and the presence of a clinical genetics department. Other information, such as infectious disease diagnosis, psychological counseling records, abuse, and criminal history, was also subject to access restriction in 42 hospitals. The disparity in how medical facilities handle sensitive genetic information demonstrates a need for discussion between medical professionals and the general public on the storage of sensitive records, including genetic information. (shrink)

The article by Dupras and Bunnik. makes a fundamental contribution in the context of the current boom in personalized medicine. We propose an additional crit...

Genetics is a biomedical science that investigates heredity, variability, occurrence of genetic diseases and their prevention. Genetic science has many fields of science, which deal with different genetic processes, methods, aspects and fields of application. The genetic research in Europe related to the individual as the main subject of the research is exposed to a wide range of ethical and legal issues. From the developments in genetic science other sciences have evolved, thanks to which the (...) modern world is able to protect the genetic information of data, and to receive the sanction while ignoring the laws of such data. However, many problems still persist in the field of protection of personal genetic information, such as regulatory standards, the inviolability of an individual, the assurance of freedom and privacy of information. This manuscript attempts to reveal the main aspects of genetic human data protection, to research conduct regulations, ethics and issues related to the protection of individuals, such as protection of privacy, discrimination, confidentiality, etc. The article mainly focuses on the Conventions and Protocols elaborated by the Council of Europe because of its role in bioethics and focus on human rights. The author examined the documents such as the Convention on Human Rights and Biomedicine, the Additional Protocol to the Convention on Human Rights and Biomedicine concerning Biomedical Research, Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data and others. Genetic discrimination is strictly forbidden by international conventions and declarations, which means that discrimination on the grounds of personal genetic information (diseases, abnormalities) is not possible in all areas, including employment and insurance. However, individuals face some problems in getting a job due to the publicity and information disclosure to their employers, or in increasing the amount of insurance premiums. However, the disclosure of genetic information may have relevant, statutory consequences and the victims may apply to court for defending these rights. It is essential to protect genetic rights, as any form of discrimination against a person on the grounds of their genetic heritage is prohibited and intervention in the health field or disclosure of such information is only possible after the person concerned has given their free and informed consent. (shrink)

Since the 1970s and more rigorously since the 1990s, many countries have regulated data protection and privacy laws in order to ensure the safety and privacy of personal data. First, a comparison is made of different acts regarding genetic information that are in force in the EU, the USA, and China. In Turkey, changes were adopted only recently following intense debates. This study aims to explore the experts’ opinions on the regulations of the health information systems, (...) class='Hi'>data security, privacy, and confidentiality in Turkey, with a particular focus on genetic data, which is more sensitive than other health data as it is a permanent identifier that is inherited to next of kin and shared with other family members. Two focus groups with 18 experts and stakeholders were conducted, discussing topics such as central data collection, legalized data sharing, and the management of genetic information in health information systems. The article concludes that the new Turkish personal data protection law is problematic as the frame of collectible data is wide-ranging, and the exceptions are extensive. Specific laws or articles dedicated to genetic data that also overlook the dimension of discrimination based on genetic differences in Turkey should be taken into consideration. In broader terms, it is intended to put up for discussion that in addition to ethical aspects, economic aspects and legal aspects of health should be included in the discussion to be carried out within the framework of socio-political analyses with culture-specific approaches and cross-culture boundaries simultaneously. (shrink)

It is not easy to understand the history and origin of the different peoples of today's world inasmuch as scientific data are partial and seemingly contradictory. These roughly fall into three categories:-prehistoric data are remains of cultures and human skeletons. They allow us to affirm that such and such a region was inhabited in such and such an epoch. Their absence, however, means nothing, and they hardly permit the attribution of a biological origin to the peoples of the (...) past because of the rapid evolution of the forms and dimensions of the skeletons during the course of time;-present genetic data give an interesting picture of the biological relationship of peoples and of the way they diverged throughout history. Their interpretation is delicate, however, especially when it concerns small populations;-“biometric” data involve the measurement of pigmentation, dimensions and proportions of the body and organs. They are susceptible to very rapid variations during the course of history and mainly give an indication of the adaptation of the people to a certain kind of environment: tropical, temperate, cold or arctic, plain or altitude, forest, savannah, prairie, steppe or desert. (shrink)

Genetic studies in the social sciences could be augmented through the additional consideration of functional (transcriptome, methylome, metabolome) and/or multimodal genetic data when attempting to understand the genetics of social phenomena. Understanding the biological pathways linking genetics and the environment will allow scientists to better evaluate the functional importance of polygenic scores.

In modern medicine, health risks are often managed through the collection of health data and subsequent intervention. One of the goals of clinical genetics, for example, is to identify genetic predisposition to disease so that individuals can intervene to prevent potential harms. But recently, some clinicians have suggested that patients should undergo less testing and monitoring in an effort to reduce overdiagnosis and overtreatment. In this paper, I explore how clinicians navigate the tension between identifying real disease risks (...) for their patients with concerns about overdiagnosis and overtreatment. I focus on clinicians ordering genetic testing for inherited cardiovascular diseases. Of the genes determined to be “clinically actionable” by the American College of Medical Genetics and Genomics, half are related to cardiovascular diseases. But, due in part to high levels of uncertainty surrounding cardiovascular genetics, there is still disagreement within the field about how to order and interpret these tests. Based on semi-structured, in-depth interviews with 20 clinicians who order genetic testing for cardiovascular diseases, I find that there is considerable variability in the ways that clinicians determine which types of genetic tests are appropriate for their patients and how they interpret test results. Most importantly, I find that many providers do not presume that more genetic data will lead to better care. Instead, increased genetic data can lead to confusion and inappropriate treatment. This re-valuation of the utility of medical data is crucial for bioethicists to explore, especially as medical fields are sorting through increasing amounts of data. (shrink)

BackgroundLarge-scale genetic data sets are frequently shared with other research groups and even released on the Internet to allow for secondary analysis. Study participants are usually not informed about such data sharing because data sets are assumed to be anonymous after stripping off personal identifiers.DiscussionThe assumption of anonymity of genetic data sets, however, is tenuous because genetic data are intrinsically self-identifying. Two types of re-identification are possible: the "Netflix" type and the "profiling" (...) type. The "Netflix" type needs another small genetic data set, usually with less than 100 SNPs but including a personal identifier. This second data set might originate from another clinical examination, a study of leftover samples or forensic testing. When merged to the primary, unidentified set it will re-identify all samples of that individual.Even with no second data set at hand, a "profiling" strategy can be developed to extract as much information as possible from a sample collection. Starting with the identification of ethnic subgroups along with predictions of body characteristics and diseases, the asthma kids case as a real-life example is used to illustrate that approach.SummaryDepending on the degree of supplemental information, there is a good chance that at least a few individuals can be identified from an anonymized data set. Any re-identification, however, may potentially harm study participants because it will release individual genetic disease risks to the public. (shrink)

The American Journal of Bioethics, Volume 11, Issue 11, Page 39-41, November 2011.

Genome-wide association studies raise important ethical and regulatory issues. This is particularly true of the current move toward broad sharing of genomic and phenotypic data. Our survey study examined the opinions of professionals involved in human subjects protection regarding genetic research review. The majority indicated that it is important for their institutional review board to offer guidance about developing and using a data repository or biobank that includes genetic data, and also about sharing this (...) class='Hi'>data with other investigators. Only one-third of respondents reported that the National Institutes of Health policy regarding data sharing among researchers in genome-wide association studies is clear. Another third answered that they did not know whether this policy is clear. Findings from this study suggest a need for increased education for IRB professionals regarding the existing data sharing policy, collaboration among IRB professionals and researchers to define best practices, and further empirical research into prospective research participants’ information needs and preferences in the context of wide data sharing. (shrink)

This paper explores the legal and ethical concept of human subject research in order to determine whether genetic research with already available biosamples and data falls within this concept. Although the ethical concept seems to have evolved to recognize research based on data as human research, from a supranational legal perspective this form of research is not considered human subject research. Thus human subject research regulations do not apply and therefore do not invoke the requirement of obtaining (...) consent prior to using an individual’s biosample or genetic data in research. Furthermore, it remains ambiguous in both the legal and ethical realm whether the use of biosamples or genetic data without additional links to the individual would invoke the same safeguards as research involving additional or specific identifiers. Seeing that research based on already available biosamples and genetic data is not governed by rules concerning human subject research, the second part of the paper analyses whether any consent requirements apply for the further use of already available bio‐samples or genetic data in research. Whereas further use of biosamples is subject to considerably lax consent requirements under Article 22 of the Oviedo Convention, under the General Data Protection Regulation further use of genetic data might not be subject to a prior consent requirement at all, unless it is stipulated in national laws. When it comes to clinical trials, however, sponsors will have the possibility under Article 28(2) of Regulation 536/2014 to obtain open consent for further use of data in any kind of future research. (shrink)

“Ancient DNA Research” is the practice of extracting, sequencing, and analyzing degraded DNA from dead organisms that are hundreds to thousands of years old. Today, many researchers are interested in adapting state-of-the-art molecular biological techniques and high-throughput sequencing technologies to optimize the recovery of DNA from fossils, then use it for studying evolutionary history. However, the recovery of DNA from fossils has also fueled the idea of resurrecting extinct species, especially as its emergence corresponded with the book and movie Jurassic (...) Park in the 1990s. In this paper, I use historical material, interviews with scientists, and philosophical literature to argue that the search for DNA from fossils can be characterized as a data-driven and celebrity-driven practice. Philosophers have recently argued the need to seriously consider the role of data-driven inquiry in the sciences, and likewise, this history highlights the need to seriously consider the role of celebrity in shaping the kind of research that gets pursued, funded, and ultimately completed. On this point, this history highlights that the traditional philosophical and scientific distinctions between data-driven and hypothesis-driven research are not always useful for understanding the process and practice of science. Consequently, I argue that the celebrity status of a particular research practice can be considered as a “serious epistemic strategy” that researchers, as well as editors and funders, employ when making choices about their research and publication processes. This interplay between celebrity and methodology matters for the epistemology of science. (shrink)

In developing a framework for assessing privacy risks, Dupras and Bunnik’s “Toward a framework for assessing privacy risks in multi-omic research and databases” considers the question of whe...

Linkage (or genetic) maps are graphs, which are intended to represent the linear ordering of genes on the chromosomes. They are constructed on the basis of statistical data concerning the transmission of genes. The invention of this technique in 1913 was driven by Morgan's group's adoption of a set of hypotheses concerning the physical mechanism of heredity. These hypotheses were themselves grounded in Morgan's defense of the chromosome theory of heredity, according to which chromosomes are the physical basis (...) of genes. In this paper, I analyze the 1919 debate between William Castle and Morgan's group, about the construction of genetic maps. The official issue of the debate concerns the arrangement of genes on chromosomes. However, the disputants tend to carry out the discussions about how one should model the data in order to draw predictions concerning the transmission of genes; the debate does not bear on the data themselves, nor does it focus on the hypotheses explaining these data. The main criteria that are appealed to by the protagonists are simplicity and predictive efficacy. However, I show that both parties' assessments of the simplicity and predictive efficacy of different ways of modeling the data themselves depend on background theoretical positions. I aim at clarifying how preference for a given model and theoretical commitments articulate. (shrink)

The framework presented by Bayefsky and Berkman is based on having clear and accurate genetic information to offer parents, for them to either decide to prepare for birth or to terminate the...

Due to the huge amount of data being generating from different sources, the analyzing and extracting of useful information from these data becomes a very complex task. The difficulty of dealing with big data optimization problems comes from many factors such as the high number of features, and the existing of lost data. The feature selection process becomes an important step in many data mining and machine learning algorithms to reduce the dimensionality of the optimization (...) problems and increase the performance of the classification or clustering algorithms. In this paper, a set of hybrid and efficient genetic algorithms are proposed to solve feature selection problem, when the handled data has a large feature size. The proposed algorithms use a new gene-weighted mechanism that can adaptively classify the features into strong relative features, weak or redundant features, and unstable features during the evolution of the algorithm. Based on this classification, the proposed algorithm gives the strong features high priority and the weak features less priority when generating new candidate solutions. In the same time, the proposed algorithm tries to more concentrate on unstable features that sometimes appear and sometimes disappear from the best solutions of the population. The performance of proposed algorithms is investigated by using different datasets and feature selection algorithms. The results show that our proposed algorithms can outperform the other feature selection algorithms and effectively enhance the classification performance over the tested datasets. (shrink)

This paper investigates epistemological and ethical implications of the growingavailability of direct-to-consumer genetic testing for the science and society. Direct-toconsumer genetic testing is characterized as the genetic testing sold directly to consumerswithout any assistance from professionals. By offering empowerment and control, companiesconvince consumers to sequence their genome by granting the company access to theirgenetic data in exchange to results that are not always accurate. To which extent doconsumers properly understand the results of their genetic testing? (...) Are consumers aware ofthe possible implications for disclosing genetic information to private companies? I addressthese questions in two steps: firstly, I discuss epistemological implications of thedevelopment of Genomics, understood as a data-intensive science, by delving into thetheoretical commitments of the concept of gene and the notion of circular causality.Secondly, I reflect upon the privacy risks of taking direct-to-consumer genetic testing in adata-rich world. Finally, I draw some conclusions on the possible consequences of direct-toconsumer genetic testing by suggesting key-concepts that may help to clarify the limits andscope of genetic testing. (shrink)

For the average person, genetic testing has two very different faces. The rise of genetic testing is often promoted as the democratization of genetics by enabling individuals to gain insights into their unique makeup. At the same time, many have raised concerns that genetic testing and sequencing reveal intensely personal and private information. As these technologies become increasingly available as consumer products, the ethical, legal, and regulatory challenges presented by genomics are ever looming. Assembling multidisciplinary experts, this (...) volume evaluates the different models used to deliver consumer genetics and considers a number of key questions: How should we mediate privacy and other ethical concerns around genetic databases? Does aggregating data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate existing healthcare disparities? Contributing authors also provide guidance on protecting consumer privacy and safety while promoting innovation. (shrink)

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (...) (68%) were aware that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production. (shrink)

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social (...) ties enacted in the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing. (shrink)

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data were investigated by (...) questionnaires and interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised. Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project. (shrink)

In popular articles that play down the genetical differences among human populations, it is often stated that about 85% of the total genetical variation is due to individual differences within populations and only 15% to differences between populations or ethnic groups. It has therefore been proposed that the division of Homo sapiens into these groups is not justified by the genetic data. This conclusion, due to R.C. Lewontin in 1972, is unwarranted because the argument ignores the fact that (...) most of the information that distinguishes populations is hidden in the correlation structure of the data and not simply in the variation of the individual factors. The underlying logic, which was discussed in the early years of the last century, is here discussed using a simple genetical example. (shrink)

The concept of homology arose from classical studies of comprative morphology, and took on a new signficance with the advent of evolutionary theory. It is currentlyl undergoing antoher metamorphosis: many developmental geneticists now dfine homology as shared patterns of gene expression. However, this ne usage conflaes difinition with criteri, and fails to recognize the meaninful asignments of homology must speify a biologcal level. We argue the although developmental genetic data can help identify homologus structures. they are niether necessary (...) nor sufficient, and do not in any case jutify a new definition of homology. (shrink)

Background Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.Methods (...) We conducted eight focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, to explore general attitudes and perspectives regarding aspects of IGG practices, applications, and policies. Five major topics were explored in each focus group: when IGG should be used; who should perform IGG; how to approach consent for genetic database users; what systems of oversight should govern IGG practitioners; and whether to notify database users if their data are involved in law enforcement (LE) matching.Results Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms.Conclusions These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG’s practice, and suggests multiple directions for future research. (shrink)

This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants (...) to be permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

ABSTRACT This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research (...) participants to be permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

Advances in genetics and related biotechnologies are having a profound effect on sport, raising important ethical questions about the limits and possibilities of the human body. Drawing on real case studies and grounded in rigorous scientific evidence, this book offers an ethical critique of current practices and explores the intersection of genetics, ethics and sport. Written by two of the world's leading authorities on the ethics of biotechnology in sport, the book addresses the philosophical implications of the latest scientific developments (...) and technological data. Distinguishing fact from popular myth and science fiction, it covers key topics such as the genetic basis of sport performance and the role of genetic testing in talent identification and development. Its ten chapters discuss current debates surrounding issues such as the shifting relationship between genetics, sports medicine and sports science, gene enhancement, gene transfer technology, doping and disability sport. The first book to be published on this important subject in more than a decade, this is fascinating reading for anyone with an interest in the ethics of sport, bioethics or sport performance. (shrink)

Nowadays, genetically modified foods find application in many sectors from livestock to health and especially in agriculture. From Islamic law perspective, the critical point is to know whether the modern biotechnology is properly used in genetically modified food production and whether these products are suitable for human health and whether all production stages are halal. Another important point is the uncertainty that may arise during the production and whether the precaution can be taken. The Islamic law methodology is of great (...) importance in understanding and resolving the above issues in line with religious values and scientific data together. This paper outlines how the Islamic law methodology can be applied to the issues of genetically modified goods in an interdisciplinary framework, by combining the pillars of Islam and scientific knowledge, and thus promoting what is morally, legally and economically beneficial for halal nutrition and life, for all humanity, Muslims and non-Muslims. We reach the conclusion that there are no definitive provisions set by Islamic law about these issues but they can be resolved within the scope of maslahah and maqasid, which is to achieve the righteous and eliminate the harmful. (shrink)

The fundamental reason that the genetics of behavior has remained so controversial for so long is that the layer of theory between data and their interpretation is thicker and more opaque than in more established areas of science. The finding that variations in tiny snippets of DNA have small but detectable relations to variation in behavior surprises no one, at least no one who was paying attention to the twin studies. How such snippets of DNA are related to differences (...) in behavior—known as the gene‐to‐behavior pathway—is the great theoretical problem of modern behavioral genetics.Given that intentional human breeding is a horrific prospect, what kind of technology might we want (or fear) out of human behavioral genetics? One possibility is a technology that could predict important behavioral characteristics of humans based on their genomes alone. A moment's thought suggests significant benefits and risks that might be associated with such a possibility, but for the moment, just consider how convincing it would be if on the day of a baby's birth we could make meaningful predictions about whether he or she would become a concert pianist or an alcoholic. This article will consider where we are right now as regards that possibility, using human height and intelligence as the primary examples. (shrink)

This article is about ‘genogeographic’ maps produced by late-Soviet geneticists and published during post-Soviet time. It focuses on the visual and numerical techniques scientists used to project genetic data onto geographic space. Rather than discussing their representational character, I follow these visuals as ‘folded objects’, describing the layering and realigning of measurements and temporalities as well as the shifts in the practices and meanings of genetics. In the 1970s Soviet biological anthropologists transformed scattered data points by means (...) of spatial statistics into visually coherent maps for a ‘genogeographical atlas’, by interpolating data for the entire USSR territory. Computer-aided modelling rendered ‘populations’ as systemic entities and enacted specific cybernetic versions of population, evolution and difference. Tracing the history of their making helps one in understanding what these folded objects hold in store, in terms of data ranging from Russian imperial and colonial anthropology, through early Soviet traditions, to cold war technologies. Folded into those maps in intricate ways, they have co-shaped post-Soviet human genetics as an ever-active site for possible reinscriptions of difference. (shrink)