Protection Of Genetic Privacy Research Articles

Personalized Medicine in the U.S. and Germany: Awareness, Acceptance, Use and Preconditions for the Wide Implementation into the Medical Standard.

The aim of our research was to collect comprehensive data about the public and physician awareness, acceptance and use of Personalized Medicine (PM), as well as their opinions on PM reimbursement and genetic privacy protection in the U.S. and Germany. In order to give a better overview, we compared our survey results with the results from other studies and discussed Personalized Medicine preconditions for its wide implementation into the medical standard. For the data collection, using the same methodology, we performed several surveys in Pennsylvania (U.S.) and Bavaria (Germany). Physicians were contacted via letter, while public representatives in person. Survey results, analyzed by means of descriptive and non-parametric statistic methods, have shown that awareness, acceptance, use and opinions on PM aspects in Pennsylvania and Bavaria were not significantly different. In both states there were strong concerns about genetic privacy protection and no support of one genetic database. The costs for Personalized Medicine were expected to be covered by health insurances and governmental funds. Summarizing, we came to the conclusion that for PM wide implementation there will be need to adjust the healthcare reimbursement system, as well as adopt new laws which protect against genetic misuse and simultaneously enable voluntary data provision.

Trust, sensitivities and science. Scientists, policy makers and representatives of interest groups met in Brussels to discuss the future of genetic research in Europe.

Biotechnology, driven by genome sequence analysis, is making ever greater strides in medical research. At the same time, however, many people feel threatened by these rapid developments and have raised objections against the further use of this technology. The public, particularly the consumer, feels excluded from the debate on how to apply the increasing store of knowledge in biology. Society wishes its views and opinions to be taken into account. To address this problem, the European Commission held a conference in Brussels from 6–7 November entitled ‘Genetics and the Future of Europe’. For the first time under the auspices of the EC, the stakeholders in the debate convened to do battle. > Interest groups welcomed scientific progress as a means to ease suffering, but remained surprisingly indifferent towards the needs of the poor It was clear that the sectors of society which are likely to benefit most from advances in genetics embrace the new technologies as a glimmer of hope. Indeed, despite lingering ethical considerations particularly about prenatal diagnosis, embryo selection or gene therapy, genetics‐derived technologies are largely viewed positively. However, not without reservations. Representatives of interest groups welcomed scientific progress as a means to ease the suffering of those they represent, but they remained surprisingly indifferent towards the needs of the poor in the third world. The debate on the use of human genetic information is largely about ethical arguments, and it is emotionally driven by a deep belief in the sanctity of human life. It is easy to make a case for the medical use of genetic information when it saves lives. A frequently used example is Adam Nash who was conceived, after prenatal selection, to have the same immunological make‐up as his elder sister Molly. …