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The early recognition of treatable diseases is playing an increasingly important role in modern medicine. Most diseases involve hereditary dispositions. For this reason, in the future, diagnostics at the DNA level will be an important part in personalised medicine. The statement of the three Academies of Sciences serves to inform the public and politics and extensively highlights the broad field of predictive genetic diagnostics from various perspectives. According to the latest knowledge, opportunities and constraints are considered, as well as the medical, ethical, economic and legal dimensions of predictive genetic diagnostics.
In the near future it will be possible to sequence man's entire chromosome set reliably and cost-efficiently. Recently, analysis methods have quickly developed and it is hopeful that the genetic foundations of diseases – whether monogenic or multifactorial diseases – will gradually be better understood and consequently new prevention and treatment opportunities will possiblyemerge as a result. Thus research should be intensified in the area of genetic medicine in Germany.
Genetic investigations are connected with value questions; many people even fear a „genetisation“ of the society. This is added to by the fact that scientists, doctors and the media sometimes draw different conclusions from genetic results and methods, also partly causing false hopes or creating anxieties. Thus society should be continuously and factually informed about the options and constraints of genetic medicine including predictive genetic diagnostics.
Recommendation 1: Predictive genetic diagnostics must only be carried out at the request of and in the interests of individual people.
Recommendation 2: The Academy Group expressively rejects eugenic ideas, such as the aim of wanting to eliminate certain genes from all individual genomes of a population or wanting to systematically „improve“ the human gene pool.
Recommendations 3-5: If during genetic diagnostics more information – „excess information“ – is generated than is required for the intended diagnostics, the Academy Group recommends discussion with the affected person concerning proceedings to bring about an „enlightened decision“. An excess of genetic information should not appear in the medical file or any doctor‘s letters.
Recommendation 6: The genetic analysis of a sample acquired abroad by a German laboratory should be acceptable if the doctor that has sent the sample confirms that the person concerned has been provided with information about the nature, scope and significance of the genetic examination in accordance with the legal regulations in the sample’s country of origin and the person concerned has subsequently granted his consent.
Recommendations 7 and 8: The newborn screening is a successful example of the use of early recognition of an illness using predictive genetic diagnostics. Surveys for other genetic illnesses should be aligned with the newborn screening. In the Gendiagnostikgesetz, newborn screening should however be regulated separately and under consideration of the particular examination situation.
Recommendations 9 and 10: A range of genetically determined and essentially treatable diseases which are highly likely to appear over a lifetime can be predicted. In the health system, organisational measures should be taken to treat patients with these kinds of diseases and persons at risk in an appropriate way. Here the further training of specialist doctors and the setting up of interdisciplinary and superregional competence centres can also play a role.
Recommendation 11: The Academy Group encourages research projects to identify the prerequisites and criteria which must be fulfilled in Germany for offering genetic screening.
Recommendation 12: The systematic investigation of healthy people for dispositions (heterozygote screening for recessive diseases) – without any family history of disease being evident – is a new situation for our society which has wide-ranging ethical and social implications. Such investigations should for the time being only be carried out within the scope of research projects.
Recommendation 13: Before predictive genetic diagnostics can be integrated into the health system, supporting evidence indicating their effectiveness and cost-effectiveness must be available. For this, scientific accompanying projects are necessary.
Recommendation 16: The Gendiagnostikgesetz stipulates that the responsible doctor is to destroy the results of genetic investigations and analyses ten years after the investigation. The Academy Group recommends: the results of the genetic diagnostics should be allowed to be stored in the interest of counselees and family members without a concrete deadline as before.
Recommendations 17 and 18: The complete sequencing of the genome can provide evidence for explaining genetic contributions to multifactorial diseases. The Academy Group recommends intensively setting up appropriate, systematic research programmes in Germany and promoting translational research and the development of medical guidelines for predictive genetic diagnostics as well as basic research.
Recommendations 19 and 20: Genetic tests, as currently offered directly via the internet – so-called DTC tests (“direct to consumer” tests) – mostly have an uncertain scientific basis and do not generally fulfil the requirements of a suitable genetic consultation. DTC tests should not be permitted because they do not fulfil the requirements of medical and ethically acceptable predictive genetic diagnostics.
Recommendations 21 and 22: Society should be informed properly and continually about the possibilities and limits of genetic medicine, including predictive genetic diagnostics. The new findings of genetic research should be presented in schools, in particular. The Academy Group recommends providing doctors with further training in genetic medicine using special measures. They must be in the position to recognise high-risk people for treatable hereditary illnesses and refer them to specialists for consultation, diagnostics and care.
Members of the Academy Group:
Prof. Dr. Peter Propping (Humangenetik, Bonn, Vorsitz)
Prof. Dr. Claus R. Bartram (Humangenetik, Heidelberg)
Prof. Dr. Matthias Brandis (Kinderheilkunde und Jugendmedizin, Freiburg)
Prof. Dr. Thomas Cremer (Biozentrum, München)
Prof. Dr. Detlev Ganten (Stiftung Charité, Berlin)
Prof. Dr. Reiner Leidl (Betriebswirtschaft, München)
Prof. Dr. Markus Löffler (Medizinische Informatik, Statistik und Epidemiologie, Leipzig)
Prof. Dr. André Reis (Humangenetik, Erlangen)
Prof. Dr. Hans-Hilger Ropers (Max-Planck-Institut für Molekulare Genetik, Berlin)
Prof. Dr. Jörg Schmidtke (Humangenetik, Hannover)
Prof. Dr. Ludger Schöls (Hertie-Institut für klinische Hirnforschung, Tübingen)
Prof. Dr. Karl Sperling (Humangenetik, Charité Berlin)
Prof. Dr. Jochen Taupitz (Bürgerliches Recht, Zivilprozessrecht, internationales Privatrecht und Rechtsvergleichung, Mannheim und Heidelberg)
Prof. Dr. Gerd Utermann (Medizinische Genetik, Molekulare und Klinische Pharmakologie, Innsbruck)
Prof. Dr. Ulrich Walter (Klinische Biochemie, Würzburg)
Prof. Dr. Karl Werdan (Innere Medizin, Halle/Saale)
Prof. Dr. Urban Wiesing (Ethik und Geschichte der Medizin, Tübingen)