Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape

Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients’ rights

RICORS2040 : The need for collaborative research in chronic kidney disease

Chronic kidney disease (CKD) is a silent and poorly known killer. The current concept of CKD is relatively young and uptake by the public, physicians and health authorities is not widespread. Physicians still confuse CKD with chronic kidney insufficiency or failure. For the wider public and health authorities, CKD evokes kidney replacement therapy (KRT). In Spain, the prevalence of KRT is 0.13%. Thus health authorities may consider CKD a non-issue: very few persons eventually need KRT and, for those in whom kidneys fail, the problem is 'solved' by dialysis or kidney transplantation. However, KRT is the tip of the iceberg in the burden of CKD. The main burden of CKD is accelerated ageing and premature death. The cut-off points for kidney function and kidney damage indexes that define CKD also mark an increased risk for all-cause premature death. CKD is the most prevalent risk factor for lethal coronavirus disease 2019 (COVID-19) and the factor that most increases the risk of death in COVID-19, after old age. Men and women undergoing KRT still have an annual mortality that is 10- to 100-fold higher than similar-age peers, and life expectancy is shortened by ~40 years for young persons on dialysis and by 15 years for young persons with a functioning kidney graft. CKD is expected to become the fifth greatest global cause of death by 2040 and the second greatest cause of death in Spain before the end of the century, a time when one in four Spaniards will have CKD. However, by 2022, CKD will become the only top-15 global predicted cause of death that is not supported by a dedicated well-funded Centres for Biomedical Research (CIBER) network structure in Spain. Realizing the underestimation of the CKD burden of disease by health authorities, the Decade of the Kidney initiative for 2020-2030 was launched by the American Association of Kidney Patients and the European Kidney Health Alliance. Leading Spanish kidney researchers grouped in the kidney collaborative research network Red de Investigación Renal have now applied for the Redes de Investigación Cooperativa Orientadas a Resultados en Salud (RICORS) call for collaborative research in Spain with the support of the Spanish Society of Nephrology, Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Riñón and ONT: RICORS2040 aims to prevent the dire predictions for the global 2040 burden of CKD from becoming true

Las agresiones a profesionales sanitarios en el contexto clínico-asistencial. Fenomenología, estudio de prevalencia, medidas preventivas y tratamiento legal

El presente trabajo de investigación titulado «Las agresiones a profesionales sanitarios en el contexto clínico-asistencial. Fenomenología, estudio de prevalencia, medidas preventivas y tratamiento legal» pretende abordar una problemática ínsita en la esfera de la Medicina (debido al carácter de profesionales sanitarios de los sujetos pasivos de dichas acciones) pero cuyas consecuencias se extienden a otras disciplinas científicas, dada la magnitud social y las funestas consecuencias que las referidas agresiones implican en términos de adecuado funcionamiento de una función pública esencial. Fundamentalmente este trabajo se centra en la cuestión de las violencias contra profesionales sanitarios provenientes tanto de los pacientes como de su entorno (familiares, contactos próximos, etc.) tratando de ofrecer una respuesta integral a la problemática expuesta..

Regulation of artificial human reproduction and European social regulations

Observing the practical situation of the techniques of assisted procreation in European societies, one is allowed to affirm that these techniques are largely in use in our societies, it did not find resistance among the secular groups of the society. It is not the case of the representatives of the Catholic church, hostile to each intervention on the reproductive mechanisms as being a violation against natural law, the most virulent opposition is linked to intervention on embryos or to each way of reproduction outside of the canonic marriage, considering therefore artificial insemination as immoral and anti-juridical. The opposition between secular and the catholic groups is of unequal intensity in the different European countries, it did not stop the application and the use of these reproductive techniques although it made the adoption difficult of measures in some states, and even in the European Parliament. However, they could not oppose the scientific and medical corporation and their arguments of treatment of diseases and of sterility of men or women. This way to present these reproductive techniques in terms of lowering of suffering of couples not able to reproduce naturally received a full social acceptance and legitimation, acceptation because the origin of these techniques is incontestably scientific and legitimation because the goal is essentially medical.info:eu-repo/semantics/publishe

Legal aspects of genetic databases for international biomedical research: the example of the International Cancer Genome Consortium (ICGC).

There is a noticeable lack of international regulation on personal data exchange and management in research. This article sheds light in this area by describing how the International Cancer Genome Consortium is developing policies and procedures to address the ethical and legal issues raised by the international transfer of data and results. These policies and procedures aim, first and most importantly, to safeguard the interests of the research participants and other involved stakeholders and, secondly, to facilitate the sharing of data and results to realize greater benefits from this kind of internationally collaborative genetic research.link_to_subscribed_fulltex