SIENNA publications on human genetics & genomics
The SIENNA project is starting to produce results that will be published both in public deliverable reports and peer-reviewed journals. This page lists our outputs covering the ELSI of human genomics. You will find a complete list of outputs from the SIENNA project here.
Deliverable reports
- Heidi Howard, Emilia Niemiec, & Alexandra Soulier. (2019). SIENNA D2.1: State of the art review of human genomic technologies (Version V0.4). Zenodo. DOI: 10.5281/zenodo.4067912
- Santa Slokenberga, Konrad Siemaszko, Zuzanna Warso, & Heidi C Howard. (2019). SIENNA D2.2 Analysis of the legal and human rights requirements for genomics in and outside the EU (Version V2.0). Zenodo. DOI: 10.5281/zenodo.4066659
- Heidi Howard, Emilia Niemiec, Lisa Tambornino, & Dirk Lanzerath. (2019). SIENNA D2.3: Survey of REC approaches and codes for genomics (Version V0.5). Zenodo. DOI: 10.5281/zenodo.4066865
- Alexandra Soulier, Emilia Niemiec, & Heidi Carmen Howard. (2019). SIENNA D2.4: Ethical Analysis of Human Genetics and Genomics (Version V0.3). Zenodo. DOI: 10.5281/zenodo.4068016
- Tim Hanson. (2020). SIENNA D2.5: Public views on genetics, genomics and gene editing in 11 EU and non-EU countries (Version V4). Zenodo. DOI: 10.5281/zenodo.4081155
- Kantar (Public Division). (2019). SIENNA D2.6: Qualitative research exploring public attitudes to human genomics (Version V3). Zenodo. DOI: 10.5281/zenodo.4081178
- Mats Hansson, & Solveig Fenet-Chantereau. (2020). SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics (V1.3). Zenodo. https://doi.org/10.5281/zenodo.7266806
- Amal Matar. (2021). SIENNA D5.2: An international code of conduct for data sharing in genomics: A proposal (Version V0.4). Zenodo. DOI: 10.5281/zenodo.5519177
- Konrad Siemaszko, Rowena Rodrigues, & Santa Slokenberga. (2020). SIENNA D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics (Version V2.0). Zenodo. DOI: 10.5281/zenodo.4121082
Scientific publications
- Matar A, Hansson M, Slokenberga S et al., A proposal for an international Code of Conduct for data sharing in genomics, Developing World Bioethics, 2022
https://doi.org/10.1111/dewb.12381
- de Araujo M, The Ethics of Genetic Cognitive Enhancement: Gene Editing or Embryo Selection?, Philosophies, 2020;5(3):20, DOI: 10.3390/philosophies5030020
- Raz AE, Niemiec E, Howard HC et al, Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users, New genetics and society, 2020;39:4 459-482, DOI: 10.1080/14636778.2020.1755636
- Niemiec E, Howard HC, Ethical issues related to research on genome editing in human embryos, Computational and Structural Biotechnology Journal, 2020;18 887-896, DOI: 10.1016/j.csbj.2020.03.014
- Niemiec E & Howard HC, Germline Genome Editing Research: What Are Gamete Donors (Not) Informed About in Consent Forms?, The CRISPR Journal, 2020;3:1 52-63, DOI: 10.1089/crispr.2019.0043
- Niemiec E & Howard HC, "Genethics" and Public Health Genomics, in Applied Genomics and Public Health / [ed] George P. Patrinos, San Diego: Elsevier Inc./Academic Press, 2020, 1, p. 243-257
- Slokenberga S & Howard HC, The right to science and human germline editing. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act, Förvaltningsrättslig Tidskrift, 2019;2:199-222.
- Canellopoulou-Bottis, Maria, The Greek Law on Genetics and Genomics - An Overview and Outlook for Future Perspectives, SSRN, available online December 4, 2018, DOI: 10.2139/ssrn.3295632
More manuscripts are under preparation or have been submitted to journals for publication.
Enhancing EU legal frameworks for genomics
The existing EU legal frameworks (e.g., clinical trials and advanced therapy medicinal products, data protection, in vitro diagnostic medical devices, medical devices, and fundamental rights) are relevant for regulating human genomic technologies and should be able to cope with many of the challenges that they pose. However, SIENNA research has identified various gaps and challenges that must be addressed in order to ensure ethical and human rights respectful design, development, deployment, and use of genomic technologies and to further the right to enjoy the benefits of scientific progress and its applications. This brief presents some of the urgent actions required and recommendations for the European Union institutions, and the Member States.
Santa Slokenberga. (2021, January 31). Enhancing EU legal frameworks for genetics & genomics research, SIENNA project Policy Brief #2 (Version V2.0). Zenodo. DOI: 10.5281/zenodo.4554977
This brief is also available in Greek: Santa Slokenberga. (2021). Βελτιώνοντας το ευρωπαϊκό νομικό πλαίσιο για την έρευνα στη γενετική και τη γονιδιωματική-Σύνοψη πολιτικής του προγράμματος SIENNA αρ. 2 (Version V2.0). Zenodo. DOI: 10.5281/zenodo.5550551