Reg­u­la­tor ex­am­in­ing ge­netic data com­pany

The Irish Times - - Front Page - JACK HORGAN-JONES

A State-backed com­pany that plans to col­lect the DNA of hun­dreds of thou­sands of Ir­ish peo­ple is be­ing probed by the Data Pro­tec­tion Com­mis­sioner, fol­low­ing com­plaints about the way it gath­ers in­for­ma­tion.

The DPC has con­firmed to pri­vacy cam­paign­ers that it has started a “wide­spread com­pli­ance and su­per­vi­sion” ex­am­i­na­tion of how the com­pany,

Ge­nomics Medicine Ire­land, pro­cesses ge­netic data it has gath­ered from Ir­ish peo­ple.

The new ex­er­cise fol­lows months of en­gage­ment be­tween the com­mis­sioner and the com­pany, and ex­tends to how data is be­ing pro­cessed in some of the largest hos­pi­tals in the State.

In a let­ter from the com­mis­sioner’s of­fice to pri­vacy group Dig­i­tal Rights Ire­land (DRI), seen by The Ir­ish Times, the

DPC states the com­mis­sioner’s of­fice, “aris­ing from the course of con­sul­ta­tive en­gage­ment with Ge­nomics Medicine Ire­land, has com­menced a wide­spread com­pli­ance and su­per­vi­sion ex­er­cise into the pro­cess­ing of per­sonal data by GMI and its clin­i­cal re­search part­ners”.

‘Statu­tory en­force­ment’

GMI, which counts the State’s Ire­land Strate­gic In­vest­ment Fund (ISIF) among its fi­nan­cial back­ers, has em­barked on ge­netic re­search projects with sev­eral large hos­pi­tals. ISIF in­vested $70 mil­lion in the com­pany last year.

If the DPC de­cides to in­ves­ti­gate and sanc­tion GMI, fines or other penal­ties could fol­low, in­clud­ing the dele­tion of data gath­ered by the com­pany.

TJ McIn­tyre, chair­man of DRI, wel­comed the de­vel­op­ment. “The DPC will be able to de­ter­mine whether the nec­es­sary safe­guards are in place and whether medics and re­searchers are com­ply­ing fully with Euro­pean and Ir­ish law,” he said.

In a state­ment, GMI said that it was en­gaged in an on­go­ing di­a­logue with the DPC re­gard­ing su­per­vi­sory and com­pli­ance mat­ters. “We wel­come any rec­om­men­da­tions the DPC may have to en­sure we main­tain best-in-class com­pli­ance stan­dards in a com­plex reg­u­la­tory en­vi­ron­ment.”

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