INFORMED CONSENT FOR DONOR REGISTRATION
- I would like to register for the donor database of DKMS Foundation NPC.
- I have read and understood the information provided during the online registration process. All questions were answered to my satisfaction.
- I hereby declare that my personal information is correct and that I will inform DKMS Foundation NPC of any changes of my address. If DKMS Foundation NPC has evidence of the incorrectness of my address data, I agree to a credit rating search at several credit bureaus.
- To the best of my knowledge, none of the reasons for exclusion stated during the online registration process apply to me.
- I transfer the ownership of the sample which I will take from my buccal swab to DKMS Foundation NPC.
- I consent to the sample being analysed in an unidentifiable form (only linked to a number) for the purpose of donor registration by a laboratory commissioned by DKMSFoundation NPC. The laboratory analysis includes the genetic examination of my tissue characteristics of the stem cells (HLA) and other potentially transplantation relevant factors (currently: KIR, CCR5, MICA, MICB, blood group ABO and Rh, CMV status; see also the bottom of this text). The sample will then be stored indefinitely for the determination of transplantation relevant factors.
- With regard to the online registration process and my sample submission, I agree that DKMS Foundation NPC acts as the responsible party:
- to store personal data to identify me (including name, address, date of birth) as well as medical data about my health and genetic data from the laboratory analysis mentioned above in order to include me in the DKMS donor database;
- to transmit search-relevant data (age and sex, genetic results of laboratory analysis and date of last contact) exclusively in unidentifiable form to international donor search registers for the search for a suitable donor. I have beeninformed about the possible risks of transmitting my de-identified data to international registers;
- to use my contact details (incl. e-mail and phone) to contact me regarding my existing DKMS Foundation NPC registration and should I be considered a suitable donor.
I have taken note of the further information on data protection below.
I am aware that I can revoke my consent at any time without giving reasons to DKMS Foundation NPC Block C, Grosvenor Square Century Way, Century City, 7441 or firstname.lastname@example.org. In case of revocation my data will be deleted unless otherwise provided by law. I have downloaded a copy of the consent form.
GLOSSARY ON THE TYPING PROFILE
HLA: Human leukocyte antigen
KIR: Killer-Cell Immunoglobulin-like Receptors
CCR5: CC-motif chemokine receptor 5
MICA, MICB: MHC Class I Chain-Related Proteins A and B
ABO: Blood group ABO
Rh: Blood group Rhesus factor
CMV: Cytomegalovirus (antibody detection)
INFORMATION ON DATA PROTECTION
- The DKMS Foundation NPC (Block C, Grosvenor Square, Century Way, Century City, Cape Town, phone: 0800 12 10 82, email@example.com, www.dkms-africa.org) is responsible for data processing.
- The information officer of DKMS Foundation NPC can be reached at firstname.lastname@example.org
- In the context of registration and sample analysis the purpose of data processing by DKMS Foundation NPC is the worldwide matching of donor data with potential transplant recipients and contacting you regarding your DKMS Foundation NPC registration. The legal basis for this is your consent in terms of the Protection of Personal Information Act 4 of 2013 (hereinafter referred to as “POPIA”).
- Another purpose of processing is to carry out scientific research with unidentifiable data in order to improve the treatment chances of patients. The research is restricted to the purpose (and data) set out before and can only be conducted by entities of DKMS Group (after re-encryption of the data). This means no identifying information will be processed for this purpose. DKMS Foundation NPC is responsible for taking sufficient technical and organisational measures to ensure data protection.
- For donor registration, your data is transmitted to authorised operators (e.g. document processors) commissioned by DKMS Foundation NPC. Your sample is sent to laboratories which may be located inside or outside of South Africa in an unidentifiable form and only for analysis and storage. All search-relevant genetic data (e.g. HLA) are also transmitted in unidentifiable form to international donor registers.
- The international registers that process your search-relevant data may be in countries, which possibly have a lower level of data protection (e.g. United States of America) than South Africa. In some cases, suitable guarantees (e.g. standard data protection clauses) exist with these recipients that establish an adequate level of data protection. In some cases, this is not possible. Subsequently there is then a risk that state or private bodies will access your data, although this would not be permitted under South African data protection law. It is also possible that you may have fewer or less enforceable rights as a data subject than under POPIA and that there is no independent supervisory authority to assist you in exercising your rights. For this reason, your data will be de-identified before being passed on in order to prevent unauthorized third parties from identifying you as far as possible. Only by transferring search-relevant data to international registers it can be ensured that you are available as a potential donor for patients all over the world. Unfortunately, it is not possible to limit the transfer of data to national registers only. DKMS Foundation NPC stores your donor data until you leave the donor database, at the latest when you reach the age of 61, unless there is a legal obligation to retain the data for a longer period (e.g. in the case of a successful donation).
- Provided that you have given the optional consent according to Section 3 of the front page, the processing of your data will also be based on your consent. The purpose of processing is to provide information about the work of DKMS Foundation NPC and to call for monetary donations.
DKMS Foundation NPC adopted a PAIA manual on the applicable data subjects’ rights, which can be found on the following website: www.dkms-africa.org/paia-manual – Your consent is voluntary and you can revoke it by contacting DKMS Foundation NPC.
DKMS Foundation NPC
Block C, Grosvenor Square, Century Way, Century City, Cape Town
0800 12 10 82