Bartha Maria Knoppers

TL;DR: The need to assess the socio-ethical and legal implications of intentional modification of the human germ line is faced once again, as the nearly unanimous condemnation of germ-line modification in the 1990s preempted the very debate that should have been taking place over the past 25 years.

TL;DR: Current frameworks might not be adequate to implement a risk prediction approach using omics factors due to the different characteristics of such approaches, so a set of Points to Consider to support decision-making is developed.

TL;DR: How commitments to open science, reproducibility, security, respect for data subjects, and research ethics oversight must be re-evaluated in a model-to-data context is explored.

TL;DR: Technological innovations including risk-stratification algorithms and large databases of longitudinal population health data and genetic data are allowing us to develop a deeper understanding how individual behaviors, characteristics, and genetics are related to health risk.

TL;DR: The International Stem Cell Forum (ISCF) Ethics Working Party's Policy Statement on Publishing SNP Genotypes of Human Embryonic Stem cell Lines (hESC) as mentioned in this paper proposes a balanced approach between the goals of open science and data sharing with the respect for fundamental bioethical principles (autonomy, privacy, beneficence, justice and research merit and integrity).