Abstract
Genetic testing is becoming routine, raising complex questions that span law and ethics: What conditions should be tested; What information should the individual receive prior to genetic analysis? Of which findings must she be informed and under what circumstances? Yet, unique challenges emerge, when a nation state creates an expectation of genetic analysis. In other words, when the state wills its citizens to "consume" genetics.
This situation is currently materialising in Denmark, where in 2016, the government committed to investing 100 million crowns (circa 13.4 million euro) in developing personalised medicine as an element of the publicly funded healthcare system. By combining existing health data with sequenced genetic data from the entire population in a central national database, the government hopes that doctors and researchers can develop targeted treatment and prevention for patients, thus preventing suffering and simultaneously saving public resources.
In order to support the introduction of personalised medicine, the Danish government has enacted legislation establishing a National Genome Centre and an opt-out consent model. This paper evaluates the provisions on consent and questions whether they can be justified as an "act" of solidarity. Ultimately, it establishes several weaknesses in the current formulation that may breach fundamental rights and human dignity. For instance, children are included in the opt-out before they have decision-making capacity. Thereby, their rights to know and not know may be decided before they reach maturity. Further, the law raises privacy concerns; it remains unclear which actors will have access to the data and under what circumstances. Indeed, the government has not presented a convincing analysis of whether individuals are adequately protected from discrimination and rights' violations, and how adequate inclusion of ethnic minorities will be ensured.
This situation is currently materialising in Denmark, where in 2016, the government committed to investing 100 million crowns (circa 13.4 million euro) in developing personalised medicine as an element of the publicly funded healthcare system. By combining existing health data with sequenced genetic data from the entire population in a central national database, the government hopes that doctors and researchers can develop targeted treatment and prevention for patients, thus preventing suffering and simultaneously saving public resources.
In order to support the introduction of personalised medicine, the Danish government has enacted legislation establishing a National Genome Centre and an opt-out consent model. This paper evaluates the provisions on consent and questions whether they can be justified as an "act" of solidarity. Ultimately, it establishes several weaknesses in the current formulation that may breach fundamental rights and human dignity. For instance, children are included in the opt-out before they have decision-making capacity. Thereby, their rights to know and not know may be decided before they reach maturity. Further, the law raises privacy concerns; it remains unclear which actors will have access to the data and under what circumstances. Indeed, the government has not presented a convincing analysis of whether individuals are adequately protected from discrimination and rights' violations, and how adequate inclusion of ethnic minorities will be ensured.
| Original language | English |
|---|---|
| Publication date | 2019 |
| Publication status | Published - 2019 |
| Event | Law and Society Annual Meeting - Washington DC, Washington DC, United States Duration: 30 May 2019 → 2 Jun 2019 https://ww2.aievolution.com/lsa1901/index.cfm?do=ev.viewEv&ev=6523 |
Conference
| Conference | Law and Society Annual Meeting |
|---|---|
| Location | Washington DC |
| Country/Territory | United States |
| City | Washington DC |
| Period | 30/05/2019 → 02/06/2019 |
| Internet address |
