Postu­la­te Béglé (16.3384): Elec­tro­nic medi­cal data. Ensu­re pro­tec­ted, trans­pa­rent and tar­ge­ted data coll­ec­tion in the revi­sed Fede­ral Data Pro­tec­tion Act.

The Fede­ral Coun­cil reque­sted the accep­tance of the postu­la­te on August 17, 2016.

Sub­mit­ted text

The Fede­ral Coun­cil is ins­truc­ted to exami­ne how the fol­lo­wing points can be inte­gra­ted into the revi­sed Fede­ral Data Pro­tec­tion Act so that data requi­ring spe­cial pro­tec­tion, such as medi­cal data, can be pro­tec­ted as well as possible.

With the advent of bio­banks, the per­so­na­li­zed medi­ci­ne net­work, and elec­tro­nic health records, it has beco­me important to estab­lish strict and uni­form regu­la­ti­ons for all par­ties invol­ved regar­ding the secu­ri­ty of data sto­rage, trans­mis­si­on, and access.

1. the­se data pro­tec­tion pro­vi­si­ons should include the future deve­lo­p­ment of inter­net-enab­led medi­cal mea­su­ring devices; the data coll­ec­ted in this way must also be protected.

2. the intro­duc­tion of the prin­ci­ple of “actu­al” pati­ent con­sent, in the form of a brief and clear state­ment, spe­ci­fic to cer­tain par­ti­cu­lar­ly sen­si­ti­ve data, would allow for real transparency.

3. the “pri­va­cy by default” approach (pri­va­cy-fri­end­ly default set­tings) and the “pri­va­cy by design” approach (pro­tec­tion of pri­va­cy alre­a­dy during deve­lo­p­ment) could be inte­gra­ted into the data coll­ec­tion models. In this way, only the data that is real­ly neces­sa­ry would be coll­ec­ted, and it would not be kept lon­ger than necessary.

4. sin­ce medi­cal data are also coll­ec­ted by non-medi­cal com­pa­nies, it would be neces­sa­ry to review how indi­vi­du­als could be made awa­re of the risks asso­cia­ted with the trans­fer of cer­tain per­so­nal data.

Justi­fi­ca­ti­on

“Actu­al” con­sent would be a trans­pa­rent alter­na­ti­ve to the cur­rent token con­sent of giving con­sent to long, legal, and often very com­plex texts.

Crea­ting more sel­ec­ti­ve data coll­ec­tion models would be a bit more expen­si­ve, but it would allow exper­ti­se to be gai­ned and Switz­er­land to estab­lish its­elf as a spe­cia­list in the field. It would be good to make the popu­la­ti­on awa­re of the dan­gers of Big Data. For exam­p­le, a smart­phone with a pedo­me­ter trans­mits infor­ma­ti­on about the owner’s phy­si­cal con­di­ti­on to the pho­ne manu­fac­tu­rer wit­hout him or her kno­wing whe­re it will end up.