Tis­sue Ban­king

Why?
It is in­dis­pens­a­ble to store hu­man tis­su­es of LCH pa­ti­ents in tis­sue banks in or­der to gain a bet­ter un­der­stan­ding of the di­sea­se. The most im­portant ques­ti­ons that must be ad­dres­sed are:

· Is the­re a ge­ne­tic ba­sis for the di­sea­se ?
· Can we find so­me bio­lo­gi­cal mar­kers to mo­ni­tor the di­sea­se and to ad­opt the the­ra­py?
· Are the­re any mo­le­cu­lar al­te­ra­ti­ons that could ser­ve as tar­gets for new the­ra­pies?

Who is Or­ga­nising Ban­king?
Each tis­sue bank must be pro­fes­sio­nal­ly or­ga­ni­zed:

· Iden­ti­fi­ca­ti­on of the ori­gin of each samp­le
· Safe con­di­ti­ons of sto­ra­ge
· Writ­ten plan for the pro­tec­tion of pri­va­te in­for­ma­ti­on, in­clu­ding the pre­ven­ti­on of un­aut­ho­ri­zed ac­cess to di­gi­tal da­ta

The­re should be a pos­si­bi­li­ty to de­li­ver tis­su­es on de­mand for a pre­ci­se re­se­arch. The con­di­ti­ons of any de­li­very must be cle­ar­ly re­gu­la­ted.

Re­gu­la­ti­ons of Tis­sue Ban­king
Se­veral le­vels of re­gu­la­ti­on exist for tis­sue banks:

· Ethi­cal re­gu­la­ti­ons
· Tech­ni­cal re­gu­la­ti­ons
· Scientific re­gu­la­ti­ons

They may be de­fi­ned in in­ter­na­tio­nal re­gu­la­ti­ons, in na­tio­nal re­gu­la­ti­ons, and in re­gu­la­ti­ons ap­plied in the re­spec­tive in­sti­tu­ti­on. In ca­se of ex­ter­nal col­la­bo­ra­tors, both the col­lec­tor and the col­la­bo­ra­tor must com­ply with all their in­ter­na­tio­nal, na­tio­nal, and in­sti­tu­tio­nal re­gu­la­ti­ons.

Consent from Pa­ti­ents and Fa­mi­lies
Tis­sue ban­king is not pos­si­ble wi­t­hout the pa­ti­ent’s in­for­med consent. For child­ren, the consent must be ob­tai­ned from a per­son with pa­ren­tal re­spon­si­bi­li­ty. Ne­vert­he­less, young pa­ti­ents should be in­vol­ved as much as pos­si­ble in any de­ci­si­on con­cerning their ca­re. For other le­gal­ly in­com­pe­tent pa­ti­ents, consent is to be ob­tai­ned from a le­gal guar­di­an. No per­son can gi­ve consent on be­half of a pa­ti­ent who has re­ached the age of 18 and is le­gal­ly com­pe­tent.

The in­for­med consent must con­tain at least the fol­lo­wing in­for­ma­ti­on:
· How tis­su­es will be col­lec­ted and stored
· How me­di­cal in­for­ma­ti­on about the pa­ti­ent will be stored
· How tis­su­es will be used in re­se­arch
· What in­for­ma­ti­on will be pro­vi­ded to re­se­ar­chers
· How the pa­ti­ent can con­ta­ct the tis­sue bank ad­mi­nis­tra­tor in ca­se he wants to wi­th­draw or mo­di­fy his consent for the use in fu­ture re­se­arch

http://www.cclg.org.uk/tissue-bank/information-for-researchers

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