The Ethics Blog

A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: integrity (Page 3 of 3)

Research with my data, but not about me

It is perplexing how the websites of large internet companies continuously adapt to me. It looks like the entire business activity of Amazon was about the musical artists I listened to yesterday. These companies evidently collect data about what I search out on their websites and automatically adapt to my computer, making the presentation of […]

The Swedish government announced new rules for research registers

Will new Swedish rules for research registers enable LifeGene to continue? In December 2011, the Swedish Data Inspection Board (DI) decided that the large biobank investment LifeGene is against the law. In its motivation, DI focused on the purpose of the data collection and the information to participants about this purpose. According to DI, LifeGene’s purpose […]

Blood samples to be destroyed in Minnesota

Privacy concerns and public health endeavours sometimes clash with each other. A recent example comes from the state of Minnesota.  After a ruling from the state’s supreme court, one has begun to destroy blood samples taken routinely from newborns in  a screening program. The practice is seen as a violation of privacy, since consent was […]

Henrietta Lacks and the power of rhetoric

Paradoxically, the victim can have the most powerful position, namely, as a “rhetorical figure.” I sense this rhetorical power in Rebecca Skloot’s bestselling book, The Immortal Life of Henrietta Lacks. I think less freely under the spell of this rhetoric. My thoughts are not allowed to discover new aspects of things. Questions are being silenced […]

Australians want to biobank

Creating biobanks for future research is sometimes debated as if such investments seriously threatened sample donors’ integrity. In Sweden, the Data Inspection Board even decided that it is against the law to collect biological samples and personal health data “for future research.” Participants cannot give their consent to anything that vague, they argued. This distrustfulness […]

Debate on changes to the European Data Protection Directive

In the December issue of the European Journal of Public Health, two groups of researchers present opposed views on planned changes to the European Data Protection Directive. One group welcomes a harmonization of data protection rules across Europe, provided that new technologies to protect identities are implemented. Their basic idea seems to be that harmonization […]

Integrity of anonymous donors

In a comment on our Swedish blog (Etikbloggen), Joanna Forsberg asks if her integrity can be breached if a sample that she donated to a biobank is anonymized (so that it cannot be traced to her) and then is reused in new biobank research. Since the sample is not traceable to her, no one can […]

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