Pharmacogenetic Passport (PGXP)

The Pharmacogenetic Passport (PGXP) study is an additional assessment, performed in adult Lifelines participants in collaboration with the UMCG Department of Genetics.
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 aspects were addressed:

1. attitudes towards (a) (pharmaco)genetic information (b) PGx passports in general, © the disclosure of PGx passports within this research context and (d) towards disclosing the information by means of a smartphone application (only)?
2. 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?
3. 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?
4. reasons/motives for accepting/rejecting disclosure of their PGx passport (in the smartphone application)?
5. intentions on sharing the information in the PGx passport with their healthcare providers?
6. 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?
7. usability of the smartphone app used for disclosing the PGx passport?
8. uptake in terms of (a) installing the application, (b) giving consent to receiving the PGx passport, © reading the information provided, and (d) sharing the information provided with their own healthcare professionals (when appropriate)?

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.

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).
  
• 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.
  
• 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).

A precise list of variables in the PGxP questionnaires will be provided later.