A Good Health Check isn’t Good Enough

The overall aim of this research project was to answer the question: What is a good health check and when may the offer of health checks be ethically justifiable? The goal was to formulate a framework to evaluate health checks and determine whether it is ethically justifi

Good health checks according to the general public; Expectations and criteria: A focus group study

Background: Health checks or health screenings identify (risk factors for) disease in people without a specific medical indication. So far, the perspective of (potential) health check users has remained underexposed in discussions about the ethics and regulation of health checks. Methods: In 2017, we conducted a qualitative study with lay people from the Netherlands (four focus groups). We asked what participants consider characteristics of good and bad health checks, and whether they saw a role for the Dutch government. Results: Participants consider a good predictive value the most important characteristic of a good health check. Information before, during and after the test, knowledgeable and reliable providers, tests for treatable (risk factors for) disease, respect for privacy, no unnecessary health risks and accessibility are also mentioned as criteria for good health checks. Participants make many assumptions about health check offers. They assume health checks provide certainty about the presence or absence of disease, that health checks offer opportunities for health benefits and that the privacy of health check data is guaranteed. In their choice for provider and test they tend to rely more on heuristics than information. Participants trust physicians to put the interest of potential health check users first and expect the Dutch government to intervene if providers other than physicians failed to do so by offering tests with a low predictive value, or tests that may harm people, or by infringing the privacy of users. Conclusions: Assumptions of participants are not always justified, but they may influence the choice to participate. This is problematic because choices for checks with a low predictive value that do not provide health benefits may create uncertainty and may cause harm to health; an outcome diametrically opposite to the one intended. Also, this may impair the relationship of trust with physicians and the Dutch government. To further and protect autonomous choice and to maintain trust, we recommend the following measures to timely adjust false expectations: advertisements that give an accurate impression of health check offers, and the installation of a quality mark

The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe

The arrival of new genetic technologies that allow efficient examination of the whole human genome (microarray, next-generation sequencing) will impact upon both laboratories (cytogenetic and molecular genetics in the first instance) and clinical/medical genetic services. The interpretation of analytical results in terms of their clinical relevance and the predicted health status poses a challenge to both laboratory and clinical geneticists, due to the wealth and complexity of the information obtained. There is a need to discuss how to best restructure the genetic services logistically and to determine the clinical utility of genetic testing so that patients can receive appropriate advice and genetic testing. To weigh up the questions and challenges of the new genetic technologies, the European Society of Human Genetics (ESHG) held a series of workshops on 10 June 2010 in Gothenburg. This was part of an ESHG satellite symposium on the 'Changing landscape of genetic testing', co-organized by the ESHG Genetic Services Quality and Public and Professional Policy Committees. The audience consisted of a mix of geneticists, ethicists, social scientists and lawyers. In this paper, we summarize the discussions during the workshops and present some of the identified ways forward to improve and adapt the genetic services so that patients receive accurate and relevant information. This paper covers ethics, clinical utility, primary care, genetic services and the blurring boundaries between healthcare and research

Additional file 2: of Good health checks according to the general public; expectations and criteria: a focus group study

Characteristics of participants. (DOCX 116 kb

Additional file 1: of What is a good health check? An interview study of health check providers’ views and practices

Interview guide (DOCX 126 kb

Additional file 1: of Good health checks according to the general public; expectations and criteria: a focus group study

Focus group guide. (DOCX 64 kb

Atlas der Alpenflora / Langsporniges Veilchen

Magasság: 1800-2700 M.Virágzás: Juni-August.Előfordulási hely: Kalkalpenkette, Wiese

Informing family members of individuals with Lynch syndrome:a guideline for clinical geneticists

<p>The diagnosis of Lynch syndrome can lead to the prevention of colorectal cancer through periodic colonoscopies and removal of premalignant lesions in susceptible individuals. Therefore, predisposed individuals identified by mutation analysis are advised to inform their at-risk relatives about the options of predictive DNA testing and preventive measures. However, it has now been established that more than half of these relatives do not receive the necessary information. Barriers in conveying information include family communication problems and variable attitudes and practice among clinical geneticists. In this complex field, both medical, psychological, ethical and juridical aspects deserve consideration. Here we summarize the development of a revised guideline for clinical geneticists that allows a more active role of the geneticist, aimed at improving procedures to inform family members in Lynch syndrome and other hereditary and familial cancer syndromes.</p>