Scientific Concept of the National Cohort (status ... - Nationale Kohorte

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A.7 Ethical aspects
To reach the general public, information and study results will be communicated via the
National Cohort website, articles in newspapers, press reports, radio, and television. Regular
communication will be important so as to inform participants of general findings and to
encourage continued participation. Therefore, it is planned that each participant receives
regular newsletters with up-to-date information about the study. Scientific results will be
published in national and international, peer-reviewed scientific journals. The state of the
project and results will also be presented at national and international conferences.
Participants will receive their own individual study results as described above (Sect. A.7.2.5).
A.7.2.7 value for the public and strategy to involve the public
The National Cohort will provide unique data for current and future biomedical research.
The study will build up a resource for research in all medical disciplines, enabling new and
groundbreaking research on the relationships between heredity, environment, and lifestyle
and their effect on the risk of chronic diseases. The results of the National Cohort will provide
new information about the causes of diseases that will lead to new means of prevention,
refined diagnostic methods, and therapeutic opportunities. The overall findings and implications
of results that derive from the National Cohort will be made available to participants
and the wider community so that they can influence public health strategies. Thus, data
obtained with the National Cohort will serve as a public good. The National Cohort seeks to
augment the value of the resource by stimulating best possible research projects in order to
ensure that the greatest potential benefit for public health may be realized from this work.
Prior to and during recruitment, in particular in the recruitment areas, well-organized public
relations activities will be conducted, including advertisement in newspapers, radio stations,
and public transports. Moreover, information about the National Cohort will be communicated
via internet (National Cohort website, Wikipedia, and Facebook). For all potential
participants there will be a free telephone service.
To reach people with a migration background, specific public relations activities will be set
up. For instance, we will aim to promote the National Cohort by advertising in migrant-specific
non-German-language media (e.g., radio stations) and informing the commissioners
for integration, local organizations, and specific information centers for immigrants about
the purpose of the study.
A.7.3 Pre-evaluation of the proposed study from an ethical perspective
The questions of how the public perceives the National Cohort project, which issues the
public identify as key for the society, and how the fact of the growing (transnational) cooperation
of such projects and biobanks is perceived are topics of considerable importance
for the project and might influence its development and acceptance. During the National
Cohort pilot period, a focus group project will deal with the issues of general knowledge and
understanding of cohort studies and biobanks, opinions and perceptions according to data
collection, data handling, data protection, consent, confidentiality, etc.
The results of the focus group project can support several decision-making processes with
regard to different key issues of the study. Critical issues, in particular ethical issues, identified
by the focus group participants will be discussed and procedures for dealing with these
issues established.
A.7