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Gezondheid

Scientifically sound verdicts

It won't be long until genetic and neurobiological knowledge is used as piece of evidence in court. Are judges, prosecutors and lawyers prepared for this?

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Society & Genomics - Genetische screening



Health

Modern life sciene provides opportunities for individual screening, so that people can be informed of the risk they run of hereditary diseases. Expectations are that, within the space of a few years, it will be possible to screen the entire genome of an individual for less than € 1,000. In other words, soon everybody can learn how high their risks are of contracting diseases such as diabetes or cancer. While offering unique opportunities for prevention, it also raises a large number of questions. What are the consequences for health care and preventive medicine? How do you ensure that people deal responsibly with the screening results? And what to do with genetic information on the risk of diseases that are determined to a large extent by lifestyle and environment? How, ultimately, do these new breakthroughs in screening contribute to individual health?

 

Current projects

  • Human-animal chimaeras as organ donor

    Chimaeras: a sound solution for the scarcity of organ donors?

    Growing human organs in animals will be possible in the near future. Which aspects should be included in the ethical debate on this technique?

  • Dealing with increasingly smaller patient groups

    Teaching ourselves how to assess personalized health technologies

    How can we make good use of the knowledge of the field of orphan diseases on dealing with small patient populations for personalized medicine development?

  • Less risky prenatal screening

    Widening the scope of screening by non-invasive prenatal testing (NIPT): A sociotechnical analysis

    Which factors hinder or promote a succesful introduction of non-invasive prenatal testing methods?

  • Fertility with a little help

    Artificial Gametes: dynamics and ethics

    A study on the ethical aspects of research on and applications of artificial gametes

  • The patient's vote

    Exploring possibilities for patient involvement in translational molecular medicine

    How and when can patients best be involved in the research to their own disease?

  • Scientifically sound verdicts

    Genes, brains and criminality in context: assessment of knowledge development in genomics and neurobiology and the transfer thereof into psychiatric forensic practice

    It won't be long until genetic and neurobiological knowledge is used as piece of evidence in court. Are judges, prosecutors and lawyers prepared for this?

  • Understanding biomaterials

    Biomaterials as biosynthetic hybrids: assessing the prospects of synthetic biology for therapy and enhancement

    Biomaterials have potential roles in treatment and enhancement of humans. How can we improve the societal embedding of biomaterials?

  • Embryos without secrets. The dilemma’s of preimplantation screening.

    Towards the transparent embryo? Dynamics and ethics of comprehensive preimplantation genetic screening

    It will be possible to test the genome of embryo's before implantation. What are the ethical aspects of the future scenarios that accompany this development?

  • Genetic testing for diabetes: creating the guidelines together

    Towards best practice guidelines for genetic testing of monogenic subtypes of diabetes

    Can we create guidelines for DNA tests upon which all stakeholders agree?

  • The 1000-euro genome

    Governance of preventive genomics

    What will be the ethical and social implications of the envisaged possibility of establishing a person’s complete DNA sequence for as little as 1000 euros in the foreseeable...

  • The repercussions of genetic testing for multifactorial diseases

    Predictive value of testing for multiple genetic variants in multifactorial diseases: implications for the discourse on ethical, legal and societal issues

    What are the ethical, legal and social consequences of the availability of genetic tests for multifactorial diseases?

  • Learning to deal with genes and learning

    Strategies for implementing a broadly supported agenda on neurogenomics research in the domain of learning and education

    How will we deal with knowledge of the effect of genes and brains on behaviour?

  • Between uncertainty and catastrophe: Viral genomics as an imaginative science

    Between uncertainty and catastrophy: viral genomics as a postnormal science

    How can genomics contribute to the management and control of viral threats?

  • Neonatal screening and beyond

    Neonatal screening and beyond: integration of hereditary hemoglobinopathy screening into primary care: preconception and prenatal

    How will genetic tests for ethnicity-related risks develop and how should formal screening be organized?

  • An individual interpretation of prenatal testing: Yes or no?

    Individualized choice in prenatal screening: yes or no? Ethical reflections

    Ethical implications of decisions on the objective and extent of prenatal screening. Should an individual make his or her decision on such research?

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Completed projects

  • A well-considered risk

    Ethical issues in ancestry-related preconception screening. An interdisciplinary case study on consanguinity and preconceptional testing in relation to health risks among Dutch Moroccans and Turks

    How do Dutch Turks and Moroccans manage an elevated risk for a physically or mentally disabled child?

  • Genomics and prevention in the first line

    Governance of preventive genomics

    Awareness of genetic testing for the prevention of common disease is realized, but clinically relevant genetic tests for primary health care are yet unknown for the stakeholders.

  • Ageing, genomics and ethics

    Ageing: personalised genomics, empowerment, identity and medicalisation

    How will society deal with knowledge that genomics yields with regard to the risk of contracting geriatric diseases?

  • Genetic susceptibility, family history and prevention

    Genetic susceptibility, family history information and disease prevention in public health: type 2 diabetes as an example

    Family history of diabetes is a useful tool to personalize prevention messages and may change preventive behaviour among people at high risk for diabetes.

  • Newborn screening: Outcomes of mixed blessing

    Newborn screening: outcomes of mixed blessing

    The expansion of the Dutch neonatal screening program has resulted in diverse “mixed blessings” outcomes and ethical considerations for both professionals and parents.

  • Genomics in health care: new forms of innovation

    Genomics as new innovation regime: implications for governance

    Medical research does not seem to change in response to the genomics innovation regime.