Trust,vulnerable populations,and genetic data sharing

Recent policies and proposed regulations, including the Notice of Proposed Rulemaking for the Common Rule and the 2014 NIH Genetic Data Sharing Policy, seek to improve research subject protections. Protections for subjects whose genetic data is shared are critical to reduce risks such as loss of confidentiality, stigma, and discrimination. In the article ‘It depends whose data are being shared: considerations for genomic data sharing policies’, Robinson et al. provide a response to our article, ‘The Growth and Gaps of Genetic Data Sharing Policies’. Robinson et al. highlight the importance of individual and group preferences. In this article, we extend the conversation on models for improving protections which will mitigate consequences for individuals and groups that are vulnerable to stigma and discrimination.     

Genetic testing,genetic medicine,and managed care

As modern human genetics moves from the research setting to the clinical setting, it will encounter the managed care system. Issues of cost, access, and quality of care will affect the availability and nature of genetic testing, genetic counseling, and genetic therapies. This Article will explore such issues as professional education, coverage of genetic services, privacy and confidentiality, and liability. It will conclude with a series of recommendations for the practice of genetic medicine in the age of managed care.     

Underwhelmed: hyperbole,regulatory policy,and the genetic revolution

Rapid advances in the field of genetics in recent years have caused some commentators to suggest the emergence of a "genetic revolution." Such advances have been both praised as the "future of medicine" and condemned for encouraging the acceptance in society of laissez-faire eugenics. Yet the effect of technological advances flowing from the science of genetics appear somewhat overstated as few products of the genetic revolution, particularly in the areas of gene therapy and genetic testing, have managed to satisfy scientists' expectations to date. Furthermore, misdirected regulation of such advances can exacerbate the social, legal, and ethical problems associated with genetics, particularly in the context of health care, where issues of human cloning and the use of premature genetic testing technologies dominate current public debate. In this article, the author criticizes the hyperbolic rhetoric surrounding the genetic revolution and calls for a more balanced and informed approach to the development of genetic policies and regulations. Such an approach should include substantial interdisciplinary debate and an active role on the part of government in the identification and communication of accurate information relating to the effects of recent technological advances in the field of genetics.     

Criminality and moral dysfunctions: neurological,biochemical, and genetic dimensions

In this article, the author attempts to demonstrate a relationship between neurobiological dysfunctions and/or genetically determined deviant behavior and personality traits as well as moral abnormalities. Data from neuroscience show that a number of neurological dysfunctions are linked to cognitive and emotional disturbances. Cognitive and emotional abnormalities, in turn, are frequently related to moral dysfunctions. Moreover, neurological disorders can produce dramatic psychological and social problems, personality changes, and behavioral problems in patients. Those mental, emotional, and psychosocial problems and related moral dysfunctions are frequently linked to violence and/or criminal behavior. Genetic research found evidence of inheritability of antisocial traits, which interfere with moral development and activities. This information has consequences for any assessment and disposition within the legal system. More research on the interrelationship between neuro(bio)logical, genetic, emotional, and mental aspects of moral dysfunctions is needed for the development of adequate treatment, prevention, and intervention programs.     

Narrating genetic disabilities: social constructs, medical treatment, and public policy

The article compares three memoirs of genetically based disability: Lisa Roney's sweet, invisible body, Georgina Kleege's Sight Unseen, and Alice Wexler's Mapping Fate. The essay explores the tension between the narrow and the broad construction of disability, as demonstrated by the 1999 Supreme Court rulings on the ADA and as experienced by these three memoirists. It concludes that the approach of narrative bioethics, as exemplified by such a study of disability and illness narratives, can offer the medical and public policy community a valuable alternative perspective on genetic disability not as an incapacity, but as a set of social relations and practices.     

Start-up of the criminal genetic database in Mendoza,Argentina

The usefulness of DNA databases is widely known and demonstrated. After the successful experiences of the UK and the USA the creation of databases increased rapidly around the world. In Latin America the implementation was slower and more problematic, with Chile and Uruguay being the first to implement them. In Argentina the problems were greater and more persistent.Although the lack of legislation or applicable laws is a generalized problem, the most difficult one to overcome was the lack of decision, interest and resources by those responsible at an institutional level.In 2016, Mendoza province modified its database law by creating the “Registro Provincial de Huellas Genéticas Digitalizadas” which allowed the process of construction and consolidation to begin. From January 2017 all prisoners, convicted and imputed of all types of crimes began to be sampled. This made the database to grow rapidly, reaching 13.821 samples in that year.During 2018, in addition to the daily imputed individuals, we began with the sampling from all the Mendoza Police Department, including the Scientific Police that deals with the crime scene. At present the database has a total of 40.652 individuals.In August 2018, the FBI's CODIS system was installed, and later the data loading process began. In 12 months we have reached 87 match or hits of which 46 correspond to sexual assault, 17 to robbery, 16 to homicides and the rest to other cases. Given that within the sexual abuse cases we were able to identify several serial sexual offenders, the 87 hits allowed clarifying 174 criminal cases.These results reaffirm the potential of the databases and gives a light of hope for victims of crime.In this work we present the advances and challenges that we faced in a chronological order.     

Religious belief, perceptions of human suffering, and support for reproductive genetic technology

Reproductive genetic technologies are becoming more controversial as they become more ubiquitous. The opponents of these technologies are largely religious groups, a fact that leads to the question of why religious groups would be more opposed to these technologies than others. Since all of these technologies are justified by their ability to relieve suffering of some kind, it is hypothesized that the actively religious have a notion of suffering different from that of advocates for these technologies, and this different notion of suffering leads to opposition to the technologies. In this article I report on a qualitative interview study of the religiously active in the United States. I find that the religiously active do have views of suffering that are distinct from the medical consensus, and these views are related to people's conclusions about the advisability of reproductive genetic technologies.     

Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003

A major component of the Genetic Discrimination Project (GDP), an Australia-wide study to examine the advantages and disadvantages for individuals of having genetic information and cases of alleged genetic discrimination, is the analysis of insurers' use of genetic test results. The peak life insurance body, IFSA, had collected data through the Australian Institute of Actuaries (AIA) for the period June 1999-May 2003 from life insurance companies in Australia regarding their use of genetic test results in insurance underwriting. The GDP negotiated with IFSA and the AIA for access to this data for independent analysis. Applications from 288 individuals who had disclosed a genetic test result included products for cover for death, trauma/crisis, income protection/disability and total and permanent disablement. A total of 81% (234/288) contained usable data for analysis. These cases involved the genetic conditions haemochromatosis (71%), Huntington disease (12%) and breast/ovarian cancer (6%). In 49% of cases, the genetic test result was described as the only influencing factor and of these, 32% involved a "positive" genetic test result. Whilst underwriting in most cases appeared to be reasonable, the article highlights several cases involving disclosure of a positive predictive test result for breast/ovarian cancer that required further investigation.