Information from forensic genetic tests of crime scene samples has been used to make claims about suspects' race and appearance. This article discusses and critiques the techniques used to make such claims, and raises policy concerns about them.

Background The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. Main body This article discusses some of the ethical challenges that were (...) encountered in these research projects. Among these challenges was the adaptation of research workflows to fit in with an exceptionally busy service delivery that is operating with limited resources. Whilst seeking guidance from the literature regarding research on deceased populations, it was noted that next of kin of decedents are not formally recognised as a vulnerable group in the existing ethical and legal frameworks in South Africa. The authors recommend that research in the forensic mortuary setting is approached using guidance for vulnerable groups, and the benefit to risk standard needs to be strongly justified. Lastly, when planning forensic genetics research, consideration must be given to the potential of uncovering incidental findings, funding to validate these findings and the feedback of results to family members; the latter of which is recommended to occur through a genetic counsellor. Conclusion It is hoped that these experiences will contribute towards a formal framework for conducting forensic genetic research in medico-legal mortuaries in South Africa. (shrink)

Utilizing social semiotic approaches, this article addresses how genetic researchers’ organizing narratives have involved extensive ontological and epistemological violence in their objectification Karitiana Indigenous people of Western Brazil. The paper analyses how genetic researchers have represented the Karitiana in the US and Canadian courts, post-9/11 forensic identification technology development, and patents. It also considers disputes over the sale of Karitiana cell lines by the US National Institutes of Health-funded Coriell Cell Repositories. These case studies reveal how the prominent population (...) geneticist Kenneth K. Kidd of Yale University and other genetics researchers have constituted the Karitiana as Extreme Other; liminal figures who define the boundaries of humanity. Originally sampled in 1987 by a Yale University epidemiologist, forensic genetic researchers have since utilized Karitiana cell lines to metonymically represent the Karitiana. The practices of objectification have imposed a genetically distinct special status upon the Karitiana that restricts recognition of their self-determination, rights and dignity, and which imposes onerous obligations to serve as research objects for the greater good of Humanity. The Karitiana are included as biological labour, but excluded from decision-making or asserting any other claims. Scientists have organized and maintained biotechnologically-mediated colonial relationships in which they and their institutions extract nearly all immediate and tangible benefits. The fusing of genetic research’s ontological and epistemological violence with the violence of state legal institutions raises important questions about the scope and practices of sovereignty, particularly in determining and enforcing states of exception through violence. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:158 Feminist Studies 46, no. 1. © 2020 by Feminist Studies, Inc. María Fernanda Olarte-Sierra and Tania Pérez-Bustos Careful Speculations: Toward a Caring Science of Forensic Genetics in Colombia Feminist Science and Technology Studies (STS) has recently opened up the question of care as a set of practices related to the sustainability of life.1 The field of feminist studies more broadly has extensively 1. This literature mostly (...) comes from Northern contexts and started to flourish with the seminal work of María Puig de la Bellacasa, “Matters of Care in Technoscience: Assembling Neglected Things,” Social Studies of Science 41, no. 1 (2010): 85–106. This essay gathers scattered feminist STS reflections on these issues and looks at them through the lens of care, including authors such as Susan Leigh Star, Donna Haraway, Isabelle Stengers, Hilary Rose, and Annemarie Mol. The concept of care orienting this exercise of rereading these authors is proposed by Berenice Fisher and Joan Tronto, “Toward a Feminist Theory of Caring,” in Circles of Care: Work and Identity in Women’s Lives, ed. Emily K. Abel and Margaret K. Nelson (Albany: State University of New York Press, 1990), 35–62. Before and after that essay came out, Puig de la Bellacasa published several other papers related to this issue, including “Touching Technologies, Touching Visions. The Reclaiming of Sensorial Experience and the Politics of Speculative Thinking,” Subjectivity 28, no. 1 (2009): 297–315; “‘Nothing Comes without Its World’: Thinking with Care,” The Sociological Review 60, no. 2 (2012): 197– 216; “Ethical Doings in Naturecultures,” Ethics, Place & Environment 13, no. 2 (2010): 151–69; “Making Time for Soil: Technoscientific Futurity and the Pace of Care,” Social Studies of Science 45, no. 5 (2015): 691–716; and Matters of Care: Speculative Ethics in More than Human Worlds (Minneapolis: University of Minnesota Press, 2017). All these publications have been widely cited by other authors, particularly in a special issue of Social Studies of Science on the politics of care published in 2015 (volume 45, issue 5). Other examples María Fernanda Olarte-Sierra and Tania Pérez-Bustos 159 studied how care, and associated practices such as transnational care chains, are feminized and precarious—involving an ethos embodied by those who actively work to maintain or preserve another’s life. Feminists have focused on the politics of care embedded in invisible jobs related to aesthetics, domestic work, child and elder care, and sexual activities and see all these tasks as related to the reproduction of life and culture.2 Central to this conceptualization of care is the understanding that these jobs are typically women’s work. There is a common association between this care and notions of “motherhood” as it relates to values such as compassion, love, and respect, which have been constructed as universally feminine. However, the main goal of feminist studies of care has been to deconstruct this association, particularly because it is imbued with the white, wealthy, heteronormative ideal of femininity that underlies a gendered division of labor. The reality is that class, race, nation, and gender determine who cares for whom, whether or not labor is paid, and to what extent care is exploitative. One strand of recent research problematizes both valorizing and criticizing care practices on the grounds that they are based on a rather homogeneous understanding of the feminine. Instead, these scholars seek to resurrect valuable feminist work without relying on essentialism of authors contributing to this discussion on care as an ethos for science include Ruth Müller and Martha Kenney, “Agential Conversations: Interviewing Postdoctoral Life Scientists and the Politics of Mundane Research Practices,” Science as Culture 24, no. 4 (2014): 537–59; Charis Thompson, Good Science: The Ethical Choreography of Stem Cell Research (Cambridge, MA: MIT Press, 2013); and Carrie Friese, “Realizing Potential in Translational Medicine: The Uncanny Emergence of Care as Science,” Current Anthropology 54 (S7): S129-S138. 2. From Latin America, see, for example, Luz Gabriela Arango Gaviria, Adira Amaya Urquijo, Tania Pérez-Bustos, and Javier Pineda Duque, eds., Género y cuidado: teorías, escenarios y políticas (Bogotá: Universidad Nacional de Colombia, 2018); Pascale Molinier and Luz Grabriela Arango Gaviria, eds., El trabajo y... (shrink)

Ethical, legal and social implications (ELSIs) in forensic genetics investigations (FGIs) also involve conducting a careful assessment of the potential benefits and responsible use of genetic information. FGIs have become an invaluable tool in solving crimes and identifying individuals in various legal and investigative contexts. Moreover, forensic geneticists are called on to manage a series of controversial aspects during the daily practice of forensic investigation, including informed consent, cases of unintended genetic findings, the proband’s privacy, post-mortem (...) sample collection, misinterpretation of results, and the correct management of genetic databases. In this scenario, this article aims to discuss the main aspects of ELSIs regarding FGIs, providing an opportunity to delve into the complexities and nuances of ethical decision-making in the context of FGIs, considering that justice should be served while upholding the highest ethical standards. To date, ELSIs in FGIs involve respecting human dignity, safeguarding privacy, ensuring justice, promoting social solidarity, and carefully weighing up risks and benefits. By adhering to these principles, the forensic geneticist can advance criminal justice while upholding individual rights and privacy. In this way, the development of clear guidelines and protocols can help navigate this ethical dilemma and ensure that FGIs are conducted with integrity, transparency, and respect for individual autonomy. (shrink)

The importance of non-codifying DNA polymorphism for the administration of justice is now well known. In Spain, however, this type of test has given rise to questions in recent years: Should consent be obtained before biological samples are taken from an individual for DNA analysis? Does society perceive these techniques and methods of analysis as being reliable? There appears to be lack of knowledge concerning the basic norms that regulate databases containing private or personal information and the protection that information (...) of this type must be given. This opinion survey and the subsequent analysis of the results in ethical terms may serve to reveal the criteria and the degree of information that society has with regard to DNA databases. In the study, 73.20% of the population surveyed was in favour of specific legislation for computer files in which DNA analysis results for forensic purposes are stored. (shrink)

In this brief report, the authors argue that while a lot of concerns about forensic DNA databases have been raised using arguments from biomedical ethics, these databases are used in a complete different context from other biomedical tools. Because they are used in the struggle against crime, the decision to create or store a genetic profile cannot be left to the individual. Instead, this decision is made by officials of a society. These decisions have to be based on a (...) policy that is the concretisation of some of society's most fundamental ideas about its own nature and function. Individuals wanting to influence these decisions have to try to influence this policy, within the bounds of a state's own self-concept. This article is an attempt to reorient the discussion about forensic DNA databases from a biomedical debate to a more political–philosophical one. (shrink)

U.S Courts have ruled that one’s genetic information is covered by the Fourth Amendment to the Constitution, which affords persons protection against unreasonable search and seizures of their personal property and personal space. The Genetic Information Non-Discrimination Act (GINA) protects people from discrimination in health insurance and employment based on genetic information. The European Union issued the General Data Protection Regulation, which included genetic information. Yet with the development and application of DNA identification in criminal investigations, governments have amassed the (...) genetic information of millions of people. And, with the rise of consumer genetics, especially since DNA ancestry tests went commercial in 2000, dozens of companies have amassed millions of personal DNA samples that are sold to various companies for analysis beyond their intended genealogical purpose. Where is the balance between the protection of people’s genetic information and the commercial and forensic acquisition of personal genetic data? How can genetic information be protected under the Fourth Amendment’s privacy provisions, as well as privacy laws in other countries, and yet be so whimsically distributed throughout society, so easily acquired by police, and voluntarily released to companies? (shrink)

Forensic DNA phenotyping (FDP) is an emerging technology that seeks to make probabilistic inferences regarding a person’s observable characteristics (“phenotype”) from DNA. The aim is to aid criminal investigations by helping to identify unknown suspected perpetrators, or to help with non-criminal missing persons cases. Here we provide results from the analysis of 36 interviews with those who have a professional stake in FDP, including forensic scientists, police officers, lawyers, government agencies and social scientists. Located in eight EU countries, (...) these individuals were asked for their views on the benefits and problems associated with the prospective use of FDP. While all interviewees distinguished between those phenotypic tests perceived to either raise ethical, social or political concerns from those tests viewed as less ethically and socially problematic, there was wide variation regarding the criteria they used to make this distinction. We discuss the implications of this in terms of responsible technology development. (shrink)

Forensic science and its influence on policing and the criminal justice system have increased since the beginning of the twentieth century. While the philosophies of the forensic science pioneers remain the pillar of modern practice, rapid advances in technology and the underpinning sciences have seen an explosion in the number of disciplines and tools. Consequently, the way in which we exploit and interpret the remnant of criminal activity are adapting to this changing environment. In order to best exploit (...) the trace, an interdisciplinary approach to both research and investigation is required. In this paper, nine postdoctoral research fellows from a multidisciplinary team discuss their vision for the future of forensic science at the crime scene, in the laboratory and beyond. This paper does not pretend to be exhaustive of all fields of forensic science, but describes a portion of the postdoctoral fellows’ interests and skills. (shrink)

New technology generates fantastic possibilities which challenge traditional distinctions between good and bad. Genetic analysis of DNA for forensic purposes is but one example of this. Here society’s need for convicting criminals can conflict with the same society’s need to assure the confidentiality of information about its members and their trust in its institutions. In order to illustrate the complexity of such challenges, a case report from Norway is presented. The point is to reflect on the way we handle (...) trailblazing health technologies in general and on cases where law and order is gained by means that can be conceived of as immoral in particular. The case calls for careful ethical reflection. (shrink)

In this paper we explore shifts in how the law and ethics allow European law enforcement officers to use forensic genetic technologies. We do so by reviewing three technologies, ‘traditional’ (STR-based) forensic DNA profiling, forensic DNA phenotyping and the searching of genetic genealogy databases. In particular, we discuss changes in how ethical boundaries have been placed around what is seen as an appropriate use of genetic technologies in European criminal justice systems. While the ‘type’ of DNA that (...) law enforcement officers are permitted to analyse offers a useful ethical reference point, for newer forensic genomic technologies, ethical scrutiny, we argue, would also look at the specific purpose or use of the technology. (shrink)

In their article, de Groot et al respond to a call to bring investigative genetic genealogy i to the bioethical debate.1 They explore the extent to which the ethical approach used in the medical clinical genetics context can be helpful for conceptualising the ethical issues associated with IGG. They conclude that such an individual-based model, which revolves around notions of consent and privacy, has significant limitations in the IGG context. The authors call for a broader balancing of the benefits (...) and risks of IGG, and the need for collective democratic engagement. de Groot et al ’s paper is a welcome addition to the literature—not only because it is an interesting and important analysis in its own right, but also because it foregrounds the importance of bringing forensic genetic debate to the bioethical audience. While forensic genetics has become increasingly widespread in the criminal justice system, bioethicists have often shied away from engaging with the ethical issues these practices raise.ii Perhaps this relates to the narrowing of bioethics debate over the past half a century to focus primarily on health-related issues,iii or to the techno-legal normative separation of DNA analysis in these two sectors, or perhaps both. Either way, as our desire for an ever-increasing collection and analysis of genetic data continues—and as we have seen in the IGG context—the lines between health, forensics and recreational associated DNA analysis and use are set to become …. (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)

Conventional forensic DNA analysis involves a matching principle, which compares DNA profiles from evidential samples to those from reference samples of known origin. In casework, however, the accessibility to a reference sample is not guaranteed which limits the use of DNA as an investigative tool. This has led to the development of phenotype prediction, which uses SNP analysis to estimate the physical appearance of the sample donor. Physical traits, such as eye, hair and skin colour, have been associated with (...) certain alleles within specific genes involved in the melanogenesis pathways. These genetic markers are also associated with ancestry and their trait prediction ability has mainly been assessed in European and North American populations. This has prompted research investigating the discriminatory power of these markers in other populations, especially those exhibiting admixture. South Africa is well known for its diversity, and the viability of these particular SNPs still needs to be assessed within this population. South African law currently restricts the use of DNA for molecular phenotyping, and there are also numerous ethical and social considerations, all of which are discussed. (shrink)

This article considers individual rights and fundamental tenets of the criminal justice system in the context of DNA evidence, in particular recent advancements in genomics that have significantly advanced law enforcement investigative capabilities in this area. It discusses a technique known as Investigative Genetic Genealogy (IGG) which utilizes genomic data held by commercial direct-to-consumer ancestry and health companies to investigate the identity of suspects linked to serious crimes. Using this technique, even if only a small proportion of the population (e.g. (...) 5%) has submitted genomic data to these companies, almost anyone in the population can be identified. We discuss this phenomenon in the context of the existing literature and arguments in relation to universal forensic DNA databases, as well as relevant recent developments in both liberal democracies and authoritarian states. We introduce the concept of a quasi-universal forensic DNA database and consider associated implications for the criminal justice system and society from the perspectives of privacy, the right not to self-incriminate, joint rights, and collective responsibility. (shrink)

This article is about the governance of expectations of forensic DNA phenotyping (FDP) innovations in Germany used for the prediction of human externally visible traits such as eye, hair, and skin color, as well as biological age and biogeographic ancestry. In 2019, FDP technologies were regulated under the label “extended DNA analysis”. We focus on the expectations of members of the forensic genetics’ community in Germany, in anticipation and response to those of regulators who advocated for such (...) technologies. Confronted with regulators’ expectations of omnipotent technologies and the optimistic promise that they will enhance public security, forensic geneticists responded with attempts to adjust such expectations, specifying limits and risks, along with a particular logic sorting matters of concern. We reflect on how forensic geneticists’ govern expectations through forms of distributed anticipatory governance, delimiting their obligations, and distributing accountability across the criminal justice system. (shrink)

The capacity of contemporary forensic genetics has rendered “race” into an interesting tool to produce clues about the identity of an unknown suspect. Whereas the conventional use of DNA profiling was primarily aimed at the individual suspect, more recently a shift of interest in forensic genetics has taken place, in which the population and the family to whom an unknown suspect allegedly belongs, has moved center stage. Making inferences about the phenotype or the family relations of (...) this unknown suspect produces suspect populations and families. We discuss the criminal investigation following the Marianne Vaatstra murder case in the Netherlands and the use of forensic technologies therein. It is in many ways an interesting case, but in this paper, we focus on how race surfaced in science and society. We show that race materializes neither in the technologies used nor in the bodies at stake. Rather, race emerges through a material semiotic relation that surfaces in the translation that occurs as humans and things move across sites. We argue that race is enacted, firstly, in the context of legislation as biology reduced to bodily characteristics; secondly, in the forensic analyses as patterns of absent presence; and, thirdly, in society as a process of phenotypic othering. (shrink)

Since the mid-1990s most EU Member States have established a national forensic DNA database. These mass repositories of DNA profiles enable the police to identify DNA stains which are found at crime scenes and are invaluable in criminal investigation. Governments have always brushed aside privacy objections by stressing that the stored DNA profiles do not contain sensitive genetic information on the included individuals and that they reside under the statutory privacy protection regulations. However, it has been generally overlooked that (...) the police also store the DNA samples from which the DNA profiles are derived. Although these DNA samples are actually a potential source of genetic information, they have so far scarcely been the subject of discussion. In this article we will show that both European and national regulations offer inadequate protection to completely prevent function creep, that is, the use of these forensic DNA samples for purposes beyond those envisaged at the time of collection. (shrink)

The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online questionnaire regarding the reasons for individuals’ voluntarily accepting or refusing to allow their DNA profile to be included in the Portuguese forensic DNA database. The analysis is undertaken from the perspective of biological citizenship and the simultaneous empowering and disempowering effects of surveillance. The (...) results indicate a pragmatic ethical framework that is linked to the cultural and emotional elements of altruism, resistance, stigma, and social representations of what is beneficial or harmful to the individual and to society. These subjectivities are anchored in commonplace images and metaphors for genetics, DNA, and forensic science that circulate in the messages transmitted by the media which pervade everyday life; hierarchies of trust in science and the justice system; and moral categories associated with the individual self-judgment in relation to crime, surveillance, and social order. (shrink)

The currently evolving debate over ethical and legal approaches to DNA data banks reflects, in part, shifting societal perceptions of dividing lines between humanity and commodity, definitions of genetic inheritance between individuals and families, and the rights of the individual versus the rights of the community. Tensions arise whether the data bank has been created for medical or for forensic purposes. The authors, through their work as community activists described more fully below, have come to realize that the key (...) to resolving these tensions and developing ethically acceptable DNA data bank practices is meaningful community engagement. Not unlike medical DNA data banks, personally identifiable DNA samples are routinely retained by states long after a convict's or arrestee's DNA profile has been derived from it and entered into the state database. The question arises, then, as to what, if any, non-forensic uses can these samples – ethically – be put. (shrink)

: Forensic DNA testing threatens American civil liberties.

Although DNA profiling has been an important forensic research technique since the late 1980s, for a long time, it had not captured much attention from either academics or the public so far.In recent years, this neglect seems to have ended. Not only has wide-spread media coverage of events such as 9/11 and the 2004 tsunami brought about widespread knowledge of the usefulness of forensic DNA identification, the development of large databases containing DNA profiles of both suspected and convicted (...) criminals has in the last few years also triggered a discussion on the intrusiveness of these measures into a number of civil rights.Indeed, although the increasing use of DNA based techniques in the criminal justice system promises to offer some great benefits for a society that is permeated with risk-aversion, at the same time it also gives rise to some worrying ethical and social consequences.In this article, we confine ourselves to an analysis of the practice of DNA sample retention by government agencies that use these samples to derive digital storable DNA profiles. While this practice seems unnecessary for the purpose of criminal investigation, it carries some severe risks for genetic privacy rights which have hardly been explored so far. (shrink)

Forensic DNA phenotyping is a genetic technology that might be used in criminal investigations. Based on DNA samples of the human body found at crime scenes, it allows to infer externally visible characteristics (such as eye, hair and skin colour) and continental-based biogeographical ancestry. By indicating the probable visible appearance of a criminal suspect, forensic DNA phenotyping allows to narrow down the focus of a criminal investigation. In this article, drawing on interviews with forensic geneticists, we explore (...) how their narratives translate contemporary focus on criminal molecularized bodies. We propose the concept of (de)materialization to approach three aspects of the forensic geneticists’ views. The first regards considering bodies as mutable entities. The second relates to socially contingent meanings attributed to bodies. The third regards to controversies surrounding data reliability. By reflecting upon the (de)materialization of criminal bodies, forensic geneticists juxtapose the defence and unsettling of forensic DNA phenotyping claims. (shrink)

Recent advances in population genetics have made it possible to infer an individual's ancestral origin with a high degree of reliability, giving rise to the new technology called ‘DNA Ancestry Profiling’. Bioethicists have raised concerns over using this technology within a forensic context, many of which stem from issues concerning race. In this article, I offer some reasons why we ought to allow forensic scientists to use DNA Ancestry Profiling to infer the race or ethnicity of perpetrators (...) — on a particular understanding of race or ethnicity — in at least some cases. First, there is reason to think the process will meet our evidential standards in many cases. Second, the technology has serious prospects for improving racial justice. Third, the ethical concerns that have been raised can be addressed. And last, using Forensic DNA Ancestry Profiling to infer race or ethnicity has many benefits over its successor technology known as Molecular Photofitting. I conclude the essay by sketching the empirical work that remains to be done. (shrink)

This collection shows how Deleuze's ideas have influenced current thinking in legal philosophy. In particular, it explores the relations between law and life, addressing topics that are contested and controversial -- war, the right to life, genetic science, and security.

Law and Order: Special Victims Unit (SVU) (1999–present) is a popular primetime drama that spotlights the use of genetic information to solve crimes. Despite the show’s heavy reliance on the forensic use of DNA evidence, the role of genetics in defining family and identity arises in complex ways. Many episodes wrestle with social, ethical, and legal questions that reflect assumptions about genetic essentialism and genetic determinism, but counterarguments about the importance of non-biological relationships, social factors, and legal entitlements (...) are given equal or greater weight. For this study, we identified and viewed 38 episodes from SVU’s first twenty seasons centered on genetic themes in non-forensic contexts. Two recurring themes emerged: (1) that the role DNA plays is only one factor in a complex web of biological and social considerations that shape our understanding of kinship; and (2) that genetic predispositions to behavioral traits such as mental illness or violence should not be seen as obscuring the responsibility of personal choice. By treating genetics as a complex source of information requiring social context to be understood, SVU allows audiences to play an active role in interpreting its meaning. (shrink)

There is scarce knowledge about the influence of the professional group, education, and age on public perspectives on the risks and benefits of forensic DNA databases. Based on data collected through an online questionnaire applied to 628 individuals in Portugal, this research fills that gap. More than three quarters of the respondents believed that the Portuguese forensic DNA database can help fight crime more efficiently and develop a swifter and more accurate justice, whereas only approximately half thought that (...) it could deter and prevent crime. Lack of security and control over access to data and the future unforeseen misuses of genetic information were the most relevant risks selected by the participants. Health care and life sciences professionals were more likely to agree with all the benefits, as opposed to those working in the field of law enforcement. More educated and older participants disagreed with benefits more often. Concerns with the risks increased with age. (shrink)

New genetic technologies promise to generate valuable insights into the aetiology of several psychiatric conditions, as well as a wider range of human and animal behaviours. Advances in the neurosciences and the application of new brain imaging techniques offer a way of integrating DNA analysis with studies that are looking at other biological markers of behaviour. While candidate 'genes for' certain conditions, including schizophrenia and bipolar disorders, are said to be 'un-discovered' at a faster rate than they are discovered, many (...) studies are being conducted on personality traits such as aggressiveness and anti-social traits. The clinical applicability and implications of these studies are often discussed within the scientific community. However, little attention has so far been paid to their possible policy implications in relation to criminality management and to Criminal Law itself. Similarly, the related ethical issues arising in the field of crime control, and the tensions between enhancing security for society and protecting civil liberties, are currently under-explored. This paper investigates these ethical issues by focusing on the views of those professionals – including judges, lawyers, probation officers and social workers – who work with individuals 'deemed at risk' of violent and aggressive behaviours. It also discusses and problematizes mainstream rhetoric and arguments around the notion of 'risky individuals'. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Genetic Testing and Genetic ScreeningPat Milmoe McCarrick (bio)In recent years there has been an enormous expansion in the knowledge that may be gleaned from the testing of an individual's genetic material to predict present or future disability or disease either for oneself or one's offspring. The Human Genome Project, which is currently mapping the entire human gene system, is identifying progressively more genetic sequencing information (see Scope Note 17, (...) The Human Genome Project). Information obtained from genetic testing raises ethical and legal questions about its uses by society. The ethical dilemmas were foreseen two decades ago by bioethicists who asked whether questionable applications could stop "legitimate pursuits" (IV, Gaylin 1972) and whether genetic disease might come to be viewed as "transmissible" in the sense of being contagious (IV, Veatch 1974).Not only has knowledge expanded, but the practice of genetic testing and screening has greatly increased as well. For example, in the case of testing for cystic fibrosis (CF), the U.S. Congress' Office of Technology Assessment (OTA) estimates that instances of screening jumped from 9310 tests in 1991 to 63,000 tests in 1992 (I, OTA [Cystic Fibrosis] 1992). In addition, the OTA estimates that within the next few years, the six million women who become pregnant each year routinely will be informed of available CF carrier tests (I, OTA [Cystic Fibrosis] 1992).Following the recent identification of a gene linked to breast cancer, Dr. Francis Sellers Collins, director of the National Center for Human Genome Research, said that "it is not inconceivable that every woman in America may want to be screened for this gene. The economic, ethical, and counseling issues will be very daunting." Dr. Collins opines that in the near future physical examinations for 18-year-olds will include DNA testing for diseases with genetic components and that physicians, in the interests of preventive medicine, will make risk-based recommendations for a healthy life-style (IV, Breo 1993). The U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research predicted as early as 1983 that before the end of the century genetic screening and counseling would become major components of both public health and individual medical care (I, U.S. President's Commission 1983). [End Page 333]The OTA defines genetic testing as "the use of specific assays to determine the genetic status of individuals already suspected to be at high risk for a particular inherited condition. The terms genetic test, genetic assay, and genetic analysis are used interchangeably to mean the actual laboratory examination of samples." In contrast, genetic screening usually uses the same assays employed for genetic testing but is distinguished from genetic testing by its target population (I, OTA [Genetic Monitoring] 1990). The National Academy of Sciences (NAS) defines screening as the systematic search of populations for persons with latent, early, or asymptomatic disease (III, NAS 1975). Some of the literature annotated for this Scope Note appears to use the terms "testing" and "screening" interchangeably.Philip Boyle of the Hastings Center points out that the language used to describe genetic variation is important and asks what words should be used: "Defects, flaws, deleterious genes, disorders, or the more neutral conditions? Using words such as normal—and its corollary, abnormal—is likely to foster stigmatization and discrimination" (III, Genetic Grammar, Boyle 1992).Areas of focus in genetic testing include: prenatal diagnosis, newborn screening, carrier screening, forensic screening, and susceptibility screening.Prenatal diagnosis discerns whether a fetus is at risk for various identifiable genetic diseases or traits. Prenatal diagnosis is made using amniotic fluid, fetal cells, and fetal or maternal blood cells obtained during amniocentesis testing; alpha fetoprotein assays or chorionic villus sampling; or ultrasound tomography, which creates fetal images on a screen. Another method, known as fetoscopy, uses a camera on a needle inserted in the uterus to view the fetus. Since prenatal screening began in 1966 (I, U.S. President's Commission 1983), the number of metabolic defects and genetic disorders that can be diagnosed prenatally has expanded greatly. There is also discussion of requiring testing for parents who are participating in an in vitro fertilization program and are at genetic... (shrink)

The vision of legendary criminologist Cesare Lombroso to use scientific theories of individual causes of crime as a basis for screening and prevention programmes targeting individuals at risk for future criminal behaviour has resurfaced, following advances in genetics, neuroscience and psychiatric epidemiology. This article analyses this idea and maps its ethical implications from a public health ethical standpoint. Twenty-seven variants of the new Lombrosian vision of forensic screening and prevention are distinguished, and some scientific and technical limitations are (...) noted. Some lures, biases and structural factors, making the application of the Lombrosian idea likely in spite of weak evidence are pointed out and noted as a specific type of ethical aspect. Many classic and complex ethical challenges for health screening programmes are shown to apply to the identified variants and the choice between them, albeit with peculiar and often provoking variations. These variations are shown to actualize an underlying theoretical conundrum in need of further study, pertaining to the relationship between public health ethics and the ethics and values of criminal law policy. (shrink)

Psychiatric genetic research investigates the genetic basis of psychiatric disorders with the aim of more effectively understanding, treating, or, ultimately, preventing such disorders. Given the challenges of recruiting research participants into such studies, the potential for long‐term benefits of such research, and seemingly minimal risk, a strong claim could be made that all non‐acute psychiatric inpatients, including forensic and involuntary patients, should be included in such research, provided they have capacity to consent. There are tensions, however, regarding the ethics (...) of recruiting psychiatric inpatients into such studies. In this paper our intention is to elucidate the source of these tensions from the perspective of research ethics committee interests and decision‐making. We begin by defining inpatient status and outline some of the assumptions surrounding the structures of inpatient care. We then introduce contemporary conceptions of vulnerability, including Florencia Luna’s account of vulnerability which we use as a framework for our analysis. While psychiatric inpatients could be subject to consent‐related vulnerabilities, we suggest that a particular kind of exploitation‐related vulnerability comes to the fore in the context of our case study. Moreover, a subset of these ethical concerns takes on particular weight in the context of genetic research in low‐ and middle‐income countries. At the same time, the automatic exclusion of inpatients from research elicits justice‐related vulnerabilities. (shrink)

Biobanks are an important resource for medical research. Genetic research on biological material from minors can yield valuable information that can improve our understanding of genetic–environmental interactions and the genesis and development of early onset genetic disorders. The major ethical concerns relating to biobanks concern consent, privacy, confidentiality, commercialisation, and the right to know or not to know. However, research on paediatric data raises specific governance and ethical questions with regard to consent and privacy. We have considered the Italian normative (...) context focusing on what is mentioned in each document on the ethical and legal requirements that guarantee the rights of minors. We found out that there is no systematic reflection on the ethical and policy issues arising from the participation of minors in biobank research. Moreover, we have focused on the same aspects for the new Italian Law on the National Forensic Biobank. (shrink)

The exchange of forensic DNA data is seen as an increasingly important tool in criminal investigations into organised crime, control strategies and counter-terrorism measures. On the basis of a set of interviews with police professionals involved in the transnational exchange of DNA data between EU countries, this paper examines how forensic DNA evidence is given meaning within the various different ways of constructing a police epistemic culture, it is, a set of shared values concerning valid knowledge and practices (...) normatively considered adequate and legitimate. The police epistemic culture is fuelled by multiple dynamics of boundary work, revealing how police professionals involved in international cooperation (i) define their specific core activities and competencies; (ii) construct particular understandings of valid knowledge and how it should be produced; (iii) enact the police epistemic culture in contrast to the epistemic cultures of the judicial authorities and forensic scientists. (shrink)

There is extensive discussion of the ethical, social, economic and political issues associated with the use of technologies based on DNA techniques. Many of these debates are premised on the assumption that DNA, and the genetic information that may be derived from it, have unique features which raise new social and ethical issues. In this paper it is argued that several of the features associated with DNA which are sometimes regarded as unique are shared with other biological materials. Others owe (...) more to the cultural image of DNA and some of the metaphors used to discuss it in biology and in wider debates than to the biological properties of DNA. The paper discusses the concepts of genetic material and genetic information and the social construction of DNA in relation to forensic DNA databases, paternity testing and genetic testing for disease. The paper concludes by suggesting that there are seven areas where issues related to DNA and genetic information are at least relatively distinct. (shrink)

During the past four years, the International Institute for Indigenous Resource Management has sponsored and co-sponsored a series of discursive roundtables on the ethical, legal, social, and cultural implications of genetic research on Indian tribes and Indian people. The deliberations of the tribal leaders, legal scholars, researchers, representatives of non-governmental organizations, and others who participated in these roundtables laid out a range of barriers to informed tribal participation in genetic research and proposed a policy, legal, and scientific research agenda to (...) fill gaps in knowledge and to otherwise support indigenous peoples' decision-making on genetic research issues.An understanding of Native American attitudes toward genetic research on their community cannot be fully understood absent an appreciation of the interrelationship among native peoples, genetic research, and the landscape, contaminated as it is by governmental and other factors. The deliberations described herein present invaluable insights into tribal attitudes toward genetic research that have application to ethical, legal and social aspects of forensic DNA databanks, sample collection and retention, and, in particular, issues of secondary non-forensic uses of such DNA. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book (...) considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (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)

Wasted Chances? The Current Political Debate on DNA Phenotyping and Biogeographical Ancestry Analysis in Criminal Investigation in Germany. This paper discusses diverse understandings of ‘responsible science’ in heated political debates. It takes a current public debate around a German law amendment draft concerning the use of novel forensic genetic techniques, namely DNA‐phenotyping and biogeographical ancestry analysis, as an example. A distinction is being made between an understanding that emphasizes scientific debate and precision, and another one that focuses on political (...) agency. The paper also addresses the question whether and how science studies scholars, given their depth of expertise in the analysis of complex problems spanning disciplinary boundaries, should contribute to national debates in policy fields where no such dialogue exists yet. (shrink)

ZusammenfassungDurch eine Gesetzesänderung im Dezember 2019 ist im Rahmen von Strafermittlungsverfahren nunmehr der Einsatz des „Forensic DNA Phenotyping“, d. h. von Technologien zur Vorhersage von Haut-, Haar- und Augenfarbe sowie biologischem Alter, erlaubt. Dieser Beitrag diskutiert die Verlässlichkeit, Nützlichkeit und Legitimität von solchen Erweiterten DNATechnologien und damit die Rahmenbedingungen ihres Einsatzes in Deutschland. Dabei wird aufgezeigt wie kompliziert, fehleranfällig, voraussetzungsreich, anspruchsvoll und heikel der Einsatz dieser Technologien in Ermittlungen sein kann, wenn nicht entsprechende Vorkehrungen getroffen werden, und wenn sie (...) nicht auf umsichtig begleitete Einzelfälle beschränkt bleiben. Aufbauend auf dieser Analyse werden schließlich Maßnahmen für die Anwendung und Regulierung Erweiterter DNA-Technologien in Deutschland vorgeschlagen. (shrink)

The paper uses insights from the so-called rape in disguise case study to describe forensic DNA practices in the Netherlands in late 1980s. It describes how "reliabilities" of forensic DNA practices were achieved. One such reliability - convincing evidence - proliferates body parts through time and space. Then, attention shifts to the individual who was suspected of having committed the rape. He was asked to deliver tissue for DNA typing, but refused to do so. Hence DNA typing could (...) not be used to connect the suspect to a cervical smear collected from the body of the victim. His refusal and the legal impossibility to use force to obtain his biological material led first to questions in the Dutch parliament and then to the Dutch forensic DNA law. Other legal measures enacted after this are also described. I argue that, by means of the various Dutch forensic DNA laws and new forensic genetic techniques, the application of forensic DNA practices have shifted from identification and evidence to a tool for criminal investigation and prevention of future crimes. In the final part of the paper, the right to inviolability of the body and its synonym bodily integrity are emphasised. I argue that despite the various forensic DNA laws, bodily integrity of obtained tissue for DNA typing is still at stake as the result of convincing evidence. (shrink)

There is a concern according to which analyzing crime scene DNA to determine biogeographic origin and skin color of suspects can lead to discrimination against minority populations. This article summarizes and explains some of those parts of the investigation process that can give rise to discrimination. The second part of the paper offers an analysis of the notion of discrimination and presents different accounts of the exact ground of its moral wrongness. As it will emerge, these different accounts lead to (...) different assessments of the use of DNA phenotype analyses in police investigations. -/- ----- Dieser Beitrag befasst sich mit der Befürchtung, dass eine Erweiterung der DNA-Analyse von Tatortspuren für Zwecke der Polizeiarbeit zu Diskriminierungen führen wird. Diese Erwartung bezieht sich insbesondere auf die Ermittlung der sogenannten biogeografischen Abstammung und der Hautschattierung. In dieser Untersuchung werden einige Stellen im Ermittlungsprozess, an denen auf Grundlage solcher Analysen Diskriminierungspotential auftreten könnte, zunächst gesammelt und dargelegt. Im zweiten Teil wird dann der Diskriminierungsbegriff genauer beleuchtet. Dabei wird sich zeigen, dass verschiedene Positionen zu der Frage, was genau eine Diskriminierung moralisch problematisch macht, zu unterschiedlichen Einschätzungen der DNA-Phänotypisierung in der Polizeiarbeit führen. (shrink)

Genetic information is becoming increasingly used in modern life, extending beyond medicine to familial history, forensics and more. Following this expansion of use, the effect of genetic information on people’s identity and ultimately people’s quality of life is being explored in a host of different disciplines. While a multidisciplinary approach is commendable and necessary, there is the potential for the multidisciplinarity to produce conceptual misconnection. That is, while experts in one field may understand their use of a term like ‘gene’, (...) ‘identity’ or ‘information’ for experts in another field, the same term may link to a distinctly different concept. These conceptual misconnections not only increase inefficiency in complex organisational practices, but can also have important ethical, legal and social consequences. This paper comes at the problem of conceptual misconnection by clarifying different uses of the terms ‘gene’, ‘identity’ and ‘information’. I start by looking at three different conceptions of the gene; the Instrumental, the Nominal and the Postgenomic Molecular. Secondly, a taxonomy of four different concepts of identity is presented; Numeric, Character, Group and Essentialised, and their use is clarified. A general concept of Information is introduced, and finally three distinct kinds of information are described. I then introduce Concept Creep as an ethical problem that arises from conceptual misconnections. The primary goal of this paper is to reduce the potential for conceptual misconnection when discussing genetic identity and genetic information. This is complimented by three secondary goals—1) to clarify what a conceptual misconnection is, 2) to explain why clarity of use is particularly important to discussions of genes, identity and information and 3) to show how concept creep between different uses of genetic identity and genetic information can have important ethical outcomes. (shrink)

Much forensic inference based upon DNA evidence is made assuming Hardy-Weinberg Equilibrium (HWE) for the genetic loci being used. Several statistical tests to detect and measure deviation from HWE have been devised, and their limitations become more obvious when testing for deviation within multiallelic DNA loci. The most popular methods-Chi-square and Likelihood-ratio tests-are based on asymptotic results and cannot guarantee a good performance in the presence of low frequency genotypes. Since the parameter space dimension increases at a quadratic rate (...) on the number of alleles, some authors suggest applying sequential methods, where the multiallelic case is reformulated as a sequence of “biallelic” tests. However, in this approach it is not obvious how to assess the general evidence of the original hypothesis; nor is it clear how to establish the significance level for its acceptance/rejection. In this work, we introduce a straightforward method for the multiallelic HWE test, which overcomes the aforementioned issues of sequential methods. The core theory for the proposed method is given by the Full Bayesian Significance Test (FBST), an intuitive Bayesian approach which does not assign positive probabilities to zero measure sets when testing sharp hypotheses. We compare FBST performance to Chi-square, Likelihood-ratio and Markov chain tests, in three numerical experiments. The results suggest that FBST is a robust and high performance method for the HWE test, even in the presence of several alleles and small sample sizes. (shrink)

Scientific knowledge is the most solid and robust kind of knowledge that humans have because of its inherent self-correcting character. Nevertheless, anti-evolutionists, climate denialists, and anti-vaxxers, among others, question some of the best-established scientific findings, making claims unsupported by empirical evidence. A common aspect of these claims is reference to the uncertainties of science concerning evolution, climate change, vaccination, and so on. This is inaccurate: whereas the broad picture is clear, there will always exist uncertainties about the details of the (...) respective phenomena. This book shows that uncertainty is an inherent feature of science that does not devalue it. In contrast, uncertainty advances science because it motivates further research. This is the first book on this topic that draws on philosophy of science to explain what uncertainty in science is and how it makes science advance. It contrasts evolution, climate change, and vaccination, where the uncertainties are exaggerated, and genetic testing and forensic science, where the uncertainties are usually overlooked. The goal is to discuss the scientific, psychological, and philosophical aspects of uncertainty in order to explain what it really is, what kinds of problems it actually poses, and why in the end it makes science advance. Contrary to public representations of scientific findings and conclusions that produce an intuitive but distorted view of science as certain, people need to understand and learn to live with uncertainty in science. This book is intended for anyone who wants to get a clear view of the nature of science. (shrink)