Over the past decade, the Combined DNA Index System (CODIS) has increased solvability of violent crimes by linking evidence DNA profiles to known offenders. At present, an in-depth analysis of the United States National DNA Data Bank effort has not assessed the success of this national public safety endeavor. Critics of this effort often focus on laboratory and police investigators unable to provide timely investigative support as a root cause(s) of CODIS' failure to increase public safety. By studying a (...) group of nearly 200 DNA cold hits obtained in SFPD criminal investigations from 2001–2006, three key performance metrics (Significance of Cold Hits, Case Progression & Judicial Resolution, and Potential Reduction of Future Criminal Activity) provide a proper context in which to define the impact of CODIS at the City and County level. Further, the analysis of a recidivist group of cold hit offenders and their past interaction with law enforcement established five noteworthy criminal case resolution trends; these trends signify challenges to CODIS in achieving meaningful case resolutions. CODIS' effectiveness and critical activities to support case resolutions are the responsibility of all criminal justice partners in order to achieve long-lasting public safety within the United States. (shrink)

Forensic data banks contain biological samples and DNA extracts as well as computerized databases of coded DNA profiles of convicted offenders, arrestees and crime scene samples. When used for investigative and law enforcement purposes, DNA data banks have been successful in providing key investigative leads in hundreds of criminal investigations. A number of these crimes would never have been resolved without use of such data banks. In addition, in some limited number of investigations, the (...) exclusion of known suspects whose DNA profiles are known to be in an offender database can save valuable investigative time.Despite the above benefits, in hundreds of cases DNA samples are never collected and administrative and laboratory logjams delay prompt database searches. Furthermore, hundreds of DNA database matches languish, without any followup by law enforcement or prosecutors. These prevent or delay DNA matches and therefore can leave the public in grave risk of potential harm from recidivistic offenders who otherwise could have been apprehended and convicted if the process functioned more effectively. (shrink)

Criminalistics laboratories routinely provide cold hits in police investigations by comparing DNA profiles from crime scenes to offenders residing in the Combined DNA Index System. Forensic DNA analysis is often glamorized in popular culture, where the perpetrators are identified and crimes solved within a single television episode. In reality forensic DNA hits can identify perpetrators of violent offenses, link multiple crimes committed by the same individual, or exclude suspects and exonerate the falsely accused. Unlike the media portrayals, downstream activities after (...) a DNA identification or cold hit are often more complex. While the Federal Bureau of Investigation cites a national Data Bank of more than 7.2 million DNA profiles and 94,000 identifications nationwide, an in-depth analysis of public safety improvements made with CODIS is currently unavailable to forensic practitioners and public policy analysts. A review of case resolutions for 198 DNA database hits in San Francisco created performance metrics to provide a concrete measure of the effectiveness of DNA databasing efforts at the city and county level. (shrink)

This manuscript provides an overview of forensic DNA data banks and their use, with some focus on existing programs established in the U.S., Canada, and the U.K. The intent is to provide a constructive analysis of both strengths and weaknesses in performance, and especially to suggest directions for improvement. Implementation of these suggestions will be crucial to allow DNA data banks to be most effective in advancing societal goals of enhancing public safety and collective security.

The properties of DNA -- DNA as universal property -- DNA as intellectual property -- DNA as national property -- DNA as personal property -- DNA as academic property -- DNA as taxable propety.

This paper examines the existing statutory frameworks in the US limiting government use of individual fingerprint, DMV, and tax data, drawing lessons for the existing statutory limitations on the use of government-controlled offender DNA databanks.

The above bit string encodes personal information about one of the authors of this essay. Of course, without rules to decode the bit string, it is impossible to say whether it is genetic information, weight, age, fingerprint, religion, etc. Layered on top of that technical decoding process is a social decoding process – how sensitive is this information? How useful is it to the government for various purposes? The objective of this paper is to offer some key lessons for the (...) regulation of genetic information collected by the state for law enforcement purposes. In the first part of the paper, we discuss two fundamental principles of informational privacy theory. Utilizing these, we then examine the statutory regimes that have emerged for the regulation of the information that the government collects in three different domains – fingerprints, department of motor vehicle records, and tax records. In the third and final part we use the results of our analysis as analogies for similar regulatory challenges in the regulation of genetic information collected for law enforcement purposes, and make some tentative recommendations. (shrink)

The aim of this paper is to explain the emergence and use of DNA fingerprinting technology in India, noting the specific concerns faced by the Indian Legal System related to the use of this novel forensic technology in the justice process. Furthermore, the proposed construction of a National DNA Data Bank is discussed taking into consideration the challenges faced by the government in legislating the DNA Bill into law. A critical analysis of the DNA Technology (Use and Application) Regulation (...) Bill, 2019 is provided to throw light upon many ethical, social, and legal issues that need to be addressed before the operationalization of the Bill to ensure that this technology is governed democratically to protect the civil liberties of citizens. (shrink)

A full appreciation for Ernst Mach's doctrine of the economy of thought must take account of his direct realism about particulars (elements) and his anti-realism about space-time laws as economical constructions. After a review of thought economy, its critics and some contemporary forms, the paper turns to the philosophical roots of Mach's doctrine. Mach claimed that the simplest, most parsimonious theories economized memory and effort by using abstract concepts and laws instead of attending to the details of each individual event (...) or experiment. For Mach, the individual case never truly repeated in all of its uniqueness, nor was all of the individual detail of a physical element adequately captured in abstract laws and schemata, however necessary these were for the pursuit of science. As can be shown from specific passages, some already published, some not, Mach's elements included physical qualia in nature similar to Russell's unsensed sensibilia, which existed even where there were no conscious observers. An argument will be presented to make the case that Mach believed in the mind-independent elements from the 1870s on, while other aspects of his thought evolved over time; I have thus dated the references to reflect this historical progression. I concentrate on Mach's ontology, as it bears on economy of thought, not his epistemology per se, which might well have been restricted to observable elements/sensations. After his own conversion to neutral monism, in the 1920s, Bertrand Russell echoed Mach's call for a 'future science' capable of handling the 'intrinsic character' of qualitative data directly without the excessive abstraction of physics. (shrink)

BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...) medical risk factors. Consumers could still obtain the genetic ancestry report, but they no longer had access to the genetic health report in the United States. However, this did not prevent the company from continuing its health research, with previously obtained and future samples, provided that consent had been obtained from the consumers concerned, or with health reports for individuals from other countries. Furthermore, 23andMe was granted FDA authorization on February 19, 2015, first to provide reports about Bloom syndrome carrier status, and, more recently, to provide consumers with “carrier status” information for 35 genes known to cause disease.DiscussionIn this Debate, we highlight the likelihood that the primary objective of the company was probably two-fold: promoting itself within the market for predictive testing for human genetic diseases and ancestry at a low cost to consumers, and establishing a high-value database/biobank for research and personal information).SummaryBy dint of this marketing approach, a two-sided market has been established between the consumer and the research laboratories, involving the establishment of a database/DNA biobank for scientific and financial gain. We describe here the profound ethical issues raised by this setup. (shrink)

Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current (...) governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.--Back cover. (shrink)

Concerns have been raised around the alleged commercialisation of South African genetic material by various research institutes nationally and abroad. We consider whether the Protection of Personal Information Act in South Africa will conflict with or complement existing protections in health law and research ethics. The Act is not applicable to de‐identified samples that cannot be re‐identified but we question whether genetic samples can ever be truly de‐identified. The research participants in this matter provided consent for use of their samples (...) for research but did not consent to commercialisation by global research institutions, and neither did the researchers. We suggest that consent models incorporating broad consent as an option should include explicit discussions around benefit sharing and commercialisation. Mistrust between researchers and participants impedes scientific research and can harm relationships built up over the years between South African researchers and local communities. (shrink)

Background Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. Discussion In this paper, we discuss (...) the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research. Summary The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required. (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)

This article describes a model of DNA banking that incorporates appropriate consumer influence on the design and use of DNA data banks. This model values input of consumer stakeholders in key decisions, including contracts between donors, researchers and the bank.

The human conceptual system comprises simulated information of sensorimotor experience and linguistic distributional information of how words are used in language. Moreover, the linguistic shortcut hypothesis predicts that people will use computationally cheaper linguistic distributional information where it is sufficient to inform a task response. In a pre‐registered category production study, we asked participants to verbally name members of concrete and abstract categories and tested whether performance could be predicted by a novel measure of sensorimotor similarity (based on an 11‐dimensional (...) representation of sensorimotor strength) and linguistic proximity (based on word co‐occurrence derived from a large corpus). As predicted, both measures predicted the order and frequency of category production but, critically, linguistic proximity had an effect above and beyond sensorimotor similarity. A follow‐up study using typicality ratings as an additional predictor found that typicality was often the strongest predictor of category production variables, but it did not subsume sensorimotor and linguistic effects. Finally, we created a novel, fully grounded computational model of conceptual activation during category production, which best approximated typical human performance when conceptual activation was allowed to spread indirectly between concepts, and when candidate category members came from both sensorimotor and linguistic distributional representations. Critically, model performance was indistinguishable from typical human performance. Results support the linguistic shortcut hypothesis in semantic processing and provide strong evidence that both linguistic and grounded representations are inherent to the functioning of the conceptual system. All materials, data, and code are available at https://osf.io/vaq56/. (shrink)

This book on privacy and data protection offers readers conceptual analysis as well as thoughtful discussion of issues, practices, and solutions. It features results of the seventh annual International Conference on Computers, Privacy, and Data Protection, CPDP 2014, held in Brussels January 2014. The book first examines profiling, a persistent core issue of data protection and privacy. It covers the emergence of profiling technologies, on-line behavioral tracking, and the impact of profiling on fundamental rights and values. Next, (...) the book looks at preventing privacy risks and harms through impact assessments. It contains discussions on the tools and methodologies for impact assessments as well as case studies. The book then goes on to cover the purported trade-off between privacy and security, ways to support privacy and data protection, and the controversial right to be forgotten, which offers individuals a means to oppose the often persistent digital memory of the web. Written during the process of the fundamental revision of the current EU data protection law by the Data Protection Package proposed by the European Commission, this interdisciplinary book presents both daring and prospective approaches. It will serve as an insightful resource for readers with an interest in privacy and data protection. (shrink)

Cultural critics of the “feminization of love” have argued that heterosexual love has been feminized by a stress on emotional expressivity that masks “masculine” love, with its greater emphasis on instrumental behaviors. Using survey data, this article examines the extent to which the feminization-of-love hypothesis can be extended to same-sex friendships. Data analyses revealed that women's friendships were more expressive than men's only when a narrow, positive definition of expressivity was employed; men's friendships were found to be more (...) aggressive, but no more instrumental, than those of women. These and other findings support the conclusion that women's friendships are more similar to the cultural images of heroic friendship and sisterhood than to the narrower image of feminized love. (shrink)

This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns.

This article distinguishes between Machian empiricism and the logical positivism of the Vienna Circle and associated philosophers. Mach's natural philosophy was a first order attempt to reform and reorganize physics, not a second order reconstruction of the "language" of physics. Mach's elements were not sense data but realistic events in the natural world and in minds, and Mach admitted unobserved elements as part of his world view. Mach's critique of metaphysics was far more subtle and concerned the elimination of (...) sensory visual imagery from natural science, leaving only concrete elements and functions, very much an inspiration to the young Einstein and Heisenberg and a useful engine of theory construction in physics. (shrink)

This article focuses on whether a certain form of consent used by biobanks – open consent – is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for all future research uses of genetic material and data. However, as biobanks process personal data, they must comply with data protection law. Data protection law is currently undergoing reform. The Proposed Data Protection Regulation (...) is the culmination of this reform and, if voted into law, will constitute a new legal framework for biobanking. The Regulation puts strict conditions on consent – in particular relating to information which must be given to the data subject. It seems clear that open consent cannot meet these requirements. 4 categories of information cannot be provided with adequate specificity: purpose, recipient, possible third country transfers, data collected. However, whilst open consent cannot meet the formal requirements laid out by the Regulation, this is not to say that these requirements are substantially undebateable. Two arguments could be put forward suggesting the applicable consent requirements should be rethought. First, from policy documents regarding the drafting process, it seems that the informational requirements in the Regulation are so strict in order to protect the data subject from risks inherent in the use of the consent mechanism in a certain context – exemplified by the online context. There are substantial differences between this context and the biobanking context. Arguably, a consent transaction in the biobanking does not present the same type of risk to the data subject. If the risks are different, then perhaps there are also grounds for a reconsideration of consent requirements? Second, an argument can be made that the legislator drafted the Regulation based on certain assumptions as to the nature of ‘data’. The authors argue that these assumptions are difficult to apply to genetic data and accordingly a different approach to consent might be preferable. Such an approach might be more open consent friendly. (shrink)

As one of the most massive and successful business sectors, the pharmaceutical industry is a potent force for good in the community, yet its behaviour is frequently questioned: could it serve society at large better than it has done in the recent past? Its own internal ethics, both in business and science, may need a careful reappraisal, as may the extent to which the law - administrative, civil and criminal - succeeds in guiding (and where neccessary contraining) it. The rules (...) of behavior that may be considered to apply to today's pharmaceutical industry have emerged over a very long period and the process goes on. Even the immensely detailed standards for quality, safety and efficacy laid down in drug law and regulation during the second half of the twentieth century have their limitations as tools for ensuring that the public interest is well served. In particular, national and regional regulatory agencies are heavily dependent on industrial data for their decision-making, their standards and competence vary, and even the existing network of agencies does not cover the entire world. What is more there are many areas of law and regulation affecting the industry, concerning for example the pricing of medicines, the conduct of clinical studies, the health protection of workers and concern for the environment. In some fields it is indeed hardly possible to maintain standards through regulation. Professor N.M. Graham Dukes, a physician and lawyer with long term experience in industrial research management, academic study and international drug policy, provides here a powerfully documented analysis into the way this industry thinks, acts, and is viewed, and examines the current trends pointing to change. *Provides a balanced picture of the current role of the pharmaceutical industry in society *Includes indices of conventions, laws, and regulations; as well as judicial and disciplinary cases *This is the only book addressing the legal implications of big pharma activities and ethical standards. (shrink)

In this paper I argue that the rationality of law and legal decision making would be enhanced by a systematic attempt to recognize and respond to the implications of empirical uncertainty for policy making and decision making. Admission of uncertainty about the accuracy of facts and the validity of assumptions relied on to make inferences of fact is commonly avoided in law because it raises the spectre of paralysis of the capacity to decide issues authoritatively. The roots of this short-sighted (...) view are found in primitive mechanical models of relationships in the empirical and social world – those of objective causality and determinism. Insofar as it is believed that if we had sufficient data a clear and unequivocal answer would be available to each question, admission of uncertainty is seen as a sign of insufficiency, incompetence, impotence, and is avoided whenever a decision that must be seen to be based on valid reasons, cannot be avoided. Avoidance of some decisions, duplicity in others, is the result. -/- Decision-making must be restructured to recognize the provisional and context-bound validity and relevance of the models we use to conceptualize and order our understanding of phenomena, and to utilize this awareness as an instrument in the production of legal policies and decisions that will be authoritative precisely because they are honestly accurate and socially responsible. The paper makes a start on such a re-structuring of the legal process by exploring the implications of the observation that if law is to be “just”: 1) legal policy must be based on accurate information and rationally related to social goals; and 2) decisions applying policy to individual fact situations must be based on assumptions that are both relevant and accurate. -/- Reasons for determinations of fact must be given, otherwise the presumption that the trier of fact is “reasonable” is an unconditional licence to use private modes of logic and theories of social and natural science. What is not disclosed cannot be challenged on grounds of invalidity or irrelevance. -/- Use of “objective validity” as a standard to evaluate conclusions made by the trier of fact in contentious cases would only serve to beg all important questions by concealing: 1) fundamental normative conflict, and 2) the limited nature and applicability of many validity claims. -/- Our use of the phrases “undue risk,” “public interest,” “reasonable,” and “necessary,” reflects the weight we choose to give conflicting social values and goals when we must make decisions in relative ignorance of all the consequences. “Objective criteria” are of limited utility in legal decision-making because their social meaning is derivative. Policy generation in the absence of any coherent conceptual-normative framework, use of vague terminology in legislation stating policy, and the absence of rational means to distinguish between individual cases to which decision-makers are required by law to apply policy, make it inevitable that many legal “decisions” made in the guise of determinations of objective fact, are charades, an arbitrary, capricious, intuitive, subjective (and thus private) use of public decision-making power. -/- Law must alter its aspirations and recognize that rational decision-making is a process that can occur only within parameters set by present knowledge and societal preference structures. Only by working with the constraints imposed by these parameters is it possible to achieve “just” decisions. Where no rational basis for differentiating cases exists, “individualized justice” must be avoided and public policy articulated in law applied uniformly to all cases in a class. The terms “reasonable” and “necessary,” used to describe policy and its consequences for specific cases, must be understood to represent provisional societal assessments, attempts to implement societal preference structures in the face of limited knowledge. Heightened awareness of the limited nature of our knowledge can only result in legal policies that have a more explicit normative basis. -/- The volume is is published with an introduction by Michael D. Bayles. It is available in hardback, paperback, and as an ebook. (shrink)

Technologies like CRISPR and gene drives are ushering in a new era of genetic engineering, wherein the technical means to modify DNA are cheaper, faster, more accurate, more widely accessible, and with more far-reaching effects than ever before. These cutting-edge technologies raise legal, ethical, cultural, and ecological questions that are so broad and consequential for both human and other-than-human life that they can be difficult to grasp. What is clear, however, is that the power to directly alter not just a (...) singular form of life but also the genetics of entire species and thus the composition of ecosystems is currently both inadequately regulated and undertheorized. In Gene Editing, Law, and the Environment, distinguished scholars from law, the life sciences, philosophy, environmental studies, science and technology studies, animal health, and religious studies examine what is at stake with these new biotechnologies for life and law, both human and beyond. (shrink)

The focus of this book is on the epistemological and hermeneutic implications of data science and artificial intelligence for democracy and the Rule of Law. How do the normative effects of automated decision systems or the interventions of robotic fellow 'beings' compare to the legal effect of written and unwritten law? To investigate these questions the book brings together two disciplinary perspectives rarely combined within the framework of one volume. One starts from the perspective of 'code and law' and (...) the other develops from the domain of 'law and literature'. Integrating original analyses of relevant novels or films, the authors discuss how computational technologies challenge traditional forms of legal thought and affect the regulation of human behavior. Thus, pertinent questions are raised about the theoretical assumptions underlying both scientific and legal practice. (shrink)

Continuing the debate over whether consciousness causes behaviour or plays no functional role in it, leading scholars discuss the question in terms of neuroscience, philosophy, law, and public policy.

Definition of the problem:The frequency and scope of human genetic banking has increased significantly in recent years and is set to expand still further. Two of the major growth areas in medical research, pharmacogenomics and population genetics, rely on large DNA banks to provide extensive, centralised and standardised genetic information as well as clinical and personal data. This development raises ethical concerns. Arguments and conclusion: Our article focuses on the appropriateness of informed consent as a means to safeguard (...) both research subjects’ rights and their good will. It will be argued that information requirements are extensive, with regard to non-therapeutic research, feedback, type of consent and possible breaches of confidentiality as well as possible implications for third parties. Given the demand of these requirements and the danger that research facilitated by these huge DNA banks may not reflect public priorities, it is argued that the research needs be steered by trustees to ensure that the altruistic act of sample donation contributes to the public good. (shrink)

When property rights and environmental legislation clash, what side should the Rule of Law weigh in on? It is from this point that Jeremy Waldron explores the Rule of Law both from an historical perspective - considering the property theory of John Locke - and from the perspective of modern legal controversies. This critical and direct account of the relation between the Rule of Law and the protection of private property criticizes the view - associated with the 'World Bank model' (...) of investor expectations - that a society which fails to protect property rights against legislative restriction is failing to support the Rule of Law. In this book, developed from the 2011 Hamlyn Lectures, Waldron rejects the idea that the Rule of Law privileges property rights over other forms of law and argues instead that the Rule of Law should endorse and applaud the use of legislation to achieve valid social objectives. (shrink)

This article examines two cases that present ethical challenges encountered by social workers in making decisions either to maintain professional boundaries or fulfil moral obligations while working with service users in vulnerable situations. In the first case, a Lebanese social worker narrates how she was motivated to step out of her official responsibilities to assist a refugee mother of three who showed suicidal ideation. In the second case, a Ugandan social worker recounts her experience while working with a family whose (...) 12-year-old daughter was raped and became pregnant, but whose parents refused to accept abortion when medical diagnosis showed that the girl’s life was in danger. A commentary from the authors is provided after each case. Both social workers were arguably motivated to act based on their concern to care for people, protect human rights, and save lives in the two case scenarios. This underscores the relevance of the ethics of care and virtue ethics in describing the associated ethical challenges in both cases. Furthermore, the dynamic nature of the ethical challenges encountered by the social workers demands open minds and flexibility in decision-making. (shrink)

While the possibility of enacting a sui generis Biobank Act has been debated in Germany at great length, as of yet the country has not implemented any biobankspecific legislation. Instead, oversight is available via a network of research and privacy laws, including those of the European Union. The Nationale Kohorte, Germany's large-scale, population-based epidemiological research biobank, is funded by the Federal Ministry of Education and Research, and there are currently 108 registered bio-banks throughout Germany. The current system, including the (...) structure and study design of the Nationale Kohorte, privileges the protection of personal information even at the cost of socially desirable research; it remains to be seen if forthcoming legislation will shift this balance. (shrink)

This timely work brings together a group of the nation's leading experts in genetics, medicine, history of science, health, law, philosophy of science, and medical ethics to assess the current state of modern human genetics, and to begin to chart the legal and ethical guidelines needed to prevent the misuse of human genetics from leading to the abuse of human beings. The six sections of the book, read together, map the social policy con tours of modern human genetics. The first (...) part describes the science of the Human Genome Project. The second addresses specific social policy implications, including the relevance of recombinant DNA history, the eugenics legacy, military applications, and issues of race and class in the context of genetic discrimination. Broader philosophical issues, including reductionism and determinism, the concept of disease, and using germline gene therapy to "improve" human beings are discussed in the third part. (shrink)

Since the early 2000s, the United States’ different administrations of justice have been prosecuting foreign companies suspected of violating US laws on bribery of foreign public officials and of failing to respect embargoes and economic sanctions. Even if these violations take place outside US borders, the American prosecution authorities consider themselves legitimate to intervene. European multinationals have been particularly sanctioned. For instance, in 2014, fines reached up to 9 billion dollars for the French bank BNP, which was accused of using (...) dollars in its transactions with certain countries sanctioned by the US. Punishing companies and hitting them in the wallet are not the only objectives of the American administration. The United States takes advantage of legal procedures against foreign companies to collect millions of bytes of data, sometimes including sensitive information on them as well as on their partners and markets. Facing this legal offensive, Europe is still struggling to provide responses to protect its companies. (shrink)

In the early 1970s, Congress considered enacting comprehensive privacy legislation, but it was unable to do so. In 1974, it passed the Privacy Act, applicable only to information in the possession of the federal government. In the intervening years, other information privacy laws enacted by Congress, such as the Health Insurance Portability and Accountability Act, have been weak and sector specific. With the explosion of information technology and the growing concerns about an absence of effective federal privacy laws, the legal (...) focus has shifted to the states. Signaling a new direction in state data privacy and consumer protection law, the California Consumer Privacy Act establishes important rights and protections for California residents with regard to the collection, use, disclosure, and sale of their personal information. The CCPA is certain to spur similar legislation and to affect national and international businesses that collect data from California's residents. Understanding the new law is important for all data‐driven industries, including health care. (shrink)

Gender equality is something that the human race has been struggling with since time immemorial. No country has achieved gender equality despite the legislative, social, and economic gains for women. Therefore, modern society likes to blame certain groups, such as religion for the gender inequalities which are faced, more than others. The main focus of this study is to evaluate the role of religious leaders in promoting gender equality through the legislation and religious texts in Zimbabwe. The study further explores (...) how certain religious norms and practices can be modified through religious texts to accommodate women in achieving gender equality. The paper acknowledges that religious leaders have a greater responsibility to standup, speak and act with and on behalf of those with less power, such as the marginalized and discriminated against, including exploited planet Earth. The paper seeks to foreground how certain traditional religious practices and norms have exacerbated gender inequality in Zimbabwe, despite the laws that have been enacted by the government of Zimbabwe to promote gender equality. The data for the paper was gathered through observations and semi-structured interviews conducted with both religious leaders and women to establish how religious norms and practices directly or indirectly affect women and how they can be modified to achieve gender equality in Zimbabwe. The data gathered was analysed through descriptive data analysis. The paper concludes by recommending that religious leaders should be thoroughly trained on how to promote gender equality through religious texts and legislation. Contribution: The article evaluated the role of religious leaders in promoting gender equality through legislation and religious texts in Zimbabwe. It argued that religious leaders have a higher need to support, advocate and act on behalf of individuals who are marginalised and subjected to discrimination on planet Earth. Hence, its contribution was in promoting gender equality through religious texts and legislation in Zimbabwe for sustainable development. (shrink)

When a minor research participant reaches the age of majority or the level of maturity necessary to be granted legal decision-making capacity, reconsent can be required for ongoing participation in research or use of health information and banked biological materials. Despite potential logistical concerns with implementation and ethical questions about the trade-offs between maximising respect for participant agency and facilitating research that may generate benefits, reconsent is the approach most consistent with both law and research ethics.Canadian common law consent requirements (...) are expansive and likely compel reconsent on obtaining capacity. Common law doctrine recognises that children are entitled to decision-making authority that reflects their evolving intelligence and understanding. Health consent legislation varies by province but generally either compels reconsent on obtaining capacity or delegates the ability to determine reconsent to research ethics boards. These boards largely rely on the Canada’s national ethics policy, the Tri-Council Policy Statement, which states that, with few exceptions, reconsent for continued participation is required when minors gain capacity that would allow them to consent to the research in which they participate. A strict interpretation of this policy could require researchers to perform frequent capacity assessments, potentially presenting feasibility concerns. In addition, Canadian policy and law are generally consistent with the core principles of key international ethical standards from the United Nations and elsewhere.In sum, reconsent of paediatric participants upon obtaining capacity should be explicit and informed in Canada, and should not be presumed from continued participation alone. (shrink)

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)

This book undertakes a multifaceted and integrated examination of biometric identification, including the current state of the technology, how it is being used, the key ethical issues, and the implications for law and regulation. The five chapters examine the main forms of contemporary biometrics–fingerprint recognition, facial recognition and DNA identification– as well the integration of biometric data with other forms of personal data, analyses key ethical concepts in play, including privacy, individual autonomy, collective responsibility, and joint ownership rights, (...) and proposes a raft of principles to guide the regulation of biometrics in liberal democracies. Biometric identification technology is developing rapidly and being implemented more widely, along with other forms of information technology. As products, services and communication moves online, digital identity and security is becoming more important. Biometric identification facilitates this transition. Citizens now use biometrics to access a smartphone or obtain a passport; law enforcement agencies use biometrics in association with CCTV to identify a terrorist in a crowd, or identify a suspect via their fingerprints or DNA; and companies use biometrics to identify their customers and employees. In some cases the use of biometrics is governed by law, in others the technology has developed and been implemented so quickly that, perhaps because it has been viewed as a valuable security enhancement, laws regulating its use have often not been updated to reflect new applications. However, the technology associated with biometrics raises significant ethical problems, including in relation to individual privacy, ownership of biometric data, dual use and, more generally, as is illustrated by the increasing use of biometrics in authoritarian states such as China, the potential for unregulated biometrics to undermine fundamental principles of liberal democracy. Resolving these ethical problems is a vital step towards more effective regulation. (shrink)

An exploration of the risks and benefits of AI, particular regarding privacy.

On January 18, 2006, the United States Supreme Court unanimously held that the constitutional challenge to New Hampshire's Parental Notification Prior to Abortion Act would be remanded to the United States Court of Appeals for the First Circuit, to determine whether the Court of Appeals could, consistent with New Hampshire's legislative intent, formulate a narrower remedy than a permanent injunction against enforcement of the parental notification law in its entirety.In 2003, New Hampshire enacted the Parental Notification Prior to Abortion Act. (...) The Act specifies, in pertinent part, that “No abortion shall be performed upon an unemancipated minor or upon a female for whom a guardian or conservator has been appointed… until at least 48 hours after written notice of the pending abortion has been delivered....” The Act allows for three exceptions where a physician may perform an abortion on a minor child without parental or guardian notification. (shrink)

This paper asks whether geographically localised, or ‘hyperlocal’, uses of Twitter succeed in creating peer-to-peer neighbourhood networks or simply act as broadcast media at a reduced scale. Literature drawn from the smart cities discourse and from a UK research project into hyperlocal media, respectively, take on these two opposing interpretations. Evidence gathered in the case study presented here is consistent with the latter, and on this basis we criticise the notion that hyperlocal social media can be seen as a community (...) in itself. We demonstrate this by creating a network map of Twitter followers of a popular hyperlocal blog in Brockley, southeast London. We describe various attributes of this network including its average degree and clustering coefficient to suggest that a small and highly connected cluster of visible local entities such as businesses form a clique at the centre of this network, with individual residents following these but not one another. We then plot the locations of these entities and demonstrate that sub-communities in the network are formed due to close geographical proximity between smaller sets of businesses. These observations are illustrated with qualitative evidence from interviews with users who suggest instead that rather than being connected to one another they benefit from what has been described as ‘neighbourhood storytelling’. Despite the limitations of working with Twitter data, we propose that this multi-modal approach offers a valuable way to investigate the experience of using social media as a communication tool in urban neighbourhoods. (shrink)

Decision makers in banking, insurance or employment mitigate many of their risks by telling “good” individuals and “bad” individuals apart. Laws codify societal understandings of which factors are legitimate grounds for differential treatment —or are considered unfair discrimination, including gender, ethnicity or age. Discrimination-aware data mining implements the hope that information technology supporting the decision process can also keep it free from unjust grounds. However, constraining data mining to exclude a fixed enumeration of potentially discriminatory features is insufficient. (...) We argue for complementing it with exploratory DADM, where discriminatory patterns are discovered and flagged rather than suppressed. This article discusses the relative merits of constraint-oriented and exploratory DADM from a conceptual viewpoint. In addition, we consider the case of loan applications to empirically assess the fitness of both discrimination-aware data mining approaches for two of their typical usage scenarios: prevention and detection. Using Mechanical Turk, 215 US-based participants were randomly placed in the roles of a bank clerk or a citizen / policy advisor. They were tasked to recommend or predict the approval or denial of a loan, across three experimental conditions: discrimination-unaware data mining, exploratory, and constraint-oriented DADM. The discrimination-aware tool support in the eDADM and cDADM treatments led to significantly higher proportions of correct decisions, which were also motivated more accurately. There is significant evidence that the relative advantage of discrimination-aware techniques depends on their intended usage. For users focussed on making and motivating their decisions in non-discriminatory ways, cDADM resulted in more accurate and less discriminatory results than eDADM. For users focussed on monitoring for preventing discriminatory decisions and motivating these conclusions, eDADM yielded more accurate results than cDADM. (shrink)

On January 18, 2006, the United States Supreme Court unanimously held that the constitutional challenge to New Hampshire's Parental Notification Prior to Abortion Act would be remanded to the United States Court of Appeals for the First Circuit, to determine whether the Court of Appeals could, consistent with New Hampshire's legislative intent, formulate a narrower remedy than a permanent injunction against enforcement of the parental notification law in its entirety.In 2003, New Hampshire enacted the Parental Notification Prior to Abortion Act. (...) The Act specifies, in pertinent part, that “No abortion shall be performed upon an unemancipated minor or upon a female for whom a guardian or conservator has been appointed… until at least 48 hours after written notice of the pending abortion has been delivered....” The Act allows for three exceptions where a physician may perform an abortion on a minor child without parental or guardian notification. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA (...) class='Hi'>data has been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue. There are no data in this work. (shrink)