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--- pgxp [2024/11/04 11:02] – trynke
+++ pgxp [2025/08/12 14:40] (current) – petra_vinke
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 The main aim of the PGXP project was to improve the understanding of requirements for returning PGx passports (in a smartphone application) to individuals (in this case: Lifelines participants) in a responsible way, such that the use of information by PGx passport recipients and their healthcare professionals is optimized.
-The following research questions were addressed:
+The following aspects were addressed:
-  - What are recipients’ attitudes towards (a) (pharmaco)genetic information (b) PGx passports in general, (c) the disclosure of PGx passports within this research context (including the unexpected offer of disclosing PGx passports as a secondary research finding/reward for participation and the design in which PGx passports are disclosed only directly to them and not to their healthcare providers) and (d) towards disclosing the information by means of a smartphone application (only)?
+  - **attitudes** towards (a) (pharmaco)genetic information (b) PGx passports in general, (c) the disclosure of PGx passports within this research context and (d) towards disclosing the information by means of a smartphone application (only)?
-  - What are recipients’ expectations regarding (a)the use of the PGx passport by themselves and their healthcare providers and (b) the allocation of responsibilities between themselves and their healthcare professionals within the pilot study?
+  - **expectations** regarding (a)the use of the PGx passport by themselves and their healthcare providers and (b) the allocation of responsibilities between themselves and their healthcare professionals within the pilot study?
-  - To what extent do recipients understand the information (a) accompanying the offer of their PGx passport (i.e., to what extent are participants capable of making an informed decision) and (b) disclosed within the actual PGx passport disclosed to them after acceptance?
+  - **understanding of the information** (a) accompanying the offer of their PGx passport (i.e., to what extent are participants capable of making an informed decision) and (b) disclosed within the actual PGx passport disclosed to them after acceptance?
-  - What are recipients’ reasons/motives for accepting/rejecting disclosure of their PGx passport (in the smartphone application)?
+  - **reasons/motives** for accepting/rejecting disclosure of their PGx passport (in the smartphone application)?
-  - What are participants’ intentions on sharing the information in the PGx passport with their healthcare providers?
+  - **intentions** on sharing the information in the PGx passport with their healthcare providers?
-  - What is the psychological impact (including anxiety and worry ) of accepting/rejecting the offer to receive a personal PGx passport and of reading the information disclosed in the PGx passport?
+  - **psychological impact** (including anxiety and worry ) of accepting/rejecting the offer to receive a personal PGx passport and of reading the information disclosed in the PGx passport?
-  - How do recipients regard the usability  of the smartphone application used for disclosing the PGx passport?
+  - **usability  of the smartphone app** used for disclosing the PGx passport?
-  - What is the uptake, in terms of (a) installing the application, (b) giving consent to receiving the PGx passport, (c) reading the information provided, and (d) sharing the information provided with their own healthcare professionals (when appropriate)?
+  - **uptake** in terms of (a) installing the application, (b) giving consent to receiving the PGx passport, (c) reading the information provided, and (d) sharing the information provided with their own healthcare professionals (when appropriate)?
-  - What are the determinants of (the different aspects of) uptake? Potential determinants evaluated are sociodemographic characteristics, health status and use of medication, the degree of understanding the information in the PGx passport, health literacy, attitudes towards the PGx passport and the disclosure of it within this research context, perceived barriers, facilitators, and benefits of sharing the PGx passport.
+Sociodemographic characteristics, health status and use of medication, health literacy, perceived barriers, facilitators, and benefits of sharing the PGx passport were taken into account as potential determinants.
 ===== Protocol =====
-The pGxP study ran between April and July 2024.
+The pGxP study ran between April and July 2024.\\
-First, n=~4300 selected participants received an invitation to fill in a baseline PGxP questionnaire abou their health, medication use, digital skills, attitude toward DNA research and PGx passports. Participants were informed that if they filled in the questionnaire, they would be offered access to their personal PGxP via a smartphone app (if they were interested).\\
+  * First, n=~4300 selected participants received an invitation to fill in a baseline PGxP questionnaire abou their health, medication use, digital skills, attitude toward DNA research and PGx passports. Participants were informed that if they filled in the questionnaire, they would be offered access to their personal PGxP via a smartphone app (if they were interested).\\
-Of the n=~1150 respondents to the baseline PGxP questionnaire, n=~1000 participants also gave permission to upload their personal pharmacogenetic characteristics into the 'Gen en Geneesmiddel' app that they could then install and access on their smartohone.\\
+  * Of the n=~1150 respondents to the baseline PGxP questionnaire, n=~1000 participants also gave permission to upload their personal pharmacogenetic characteristics into the 'Gen en Geneesmiddel' app that they could then install and access on their smartohone.\\
-A total of n=~620 participants completed all the steps and received their personal information in the app.//
+  * A total of n=~620 participants completed all the steps and received their personal information in the app.\\
+  * As a final step, all ~1150 respondents to the baseline PGxP questionnaire received a follow-up questionnaire containing questions on their decision-making process, opinion on the shared information and on the app, and the actual use of the PGxP (if applicable).
-As a final step, all ~1150 respondents to the baseline PGxP questionnaire received a follow-up questionnaire containing questions on their decision-making process, opinion on the shared information and on the app, and the actual use of the PGxP (if applicable).
+===== Publications =====
+The following publication was based on the PGXP Assessment:
+  * Lanting et al. (2025) [[https://www.cell.com/ajhg/abstract/S0002-9297(25)00102-8|Low-cost generation of clinical-grade, layperson-friendly pharmacogenetic passports using oligonucleotide arrays]]. AJHG 112(5): P1015-1028