Table 5 Citations from focus group excerpts

 Length

Cit. 1

“The text is very long which makes it boring to read.” (excerpt FG7)

 Structure

Cit. 2

“The main purpose of the text is to recruit biobank donors. This should be made clear right at the beginning of the text.” (excerpt FG4)

 Style

Cit. 3

“In almost all paragraphs, the text uses many nouns and some sentences are way too long.” (excerpt FG2)

 Long-term storage

Cit. 4

“What does ‘long-term storage of data and biomaterials’ mean?” (excerpt FG3)

 Pseudonymisation

Cit. 5

“I did not understand the difference between ‘pseudonymisation’ and ‘anonymization’”(excerpt FG6)

 Rephrasing paragraph

Cit. 6

“The paragraph on potential benefits of biobank research consists of one five-line-long sentence. This paragraph should be revised.” (excerpt FG4)

 Adding illustrations

Cit. 7

“You should add some figures to illustrate the process of biobank donation and usage of the donated materials for research.” (excerpt FG7)

 Balanced information

Cit. 8

“All things considered, the text is surprisingly understandable and the information it gives appear impartial and balanced.” (excerpt FG4)

 Trustworthiness

Cit. 9

“The text seems very objective and trustworthy. It does not try to influence readers in one or the other direction.” (excerpt FG5)

 Discomforting terms

Cit. 10

“At first, the term ‘body materials’ scared me. I thought they wanted to rip out parts of my body. Then I realized it’s only blood, urine, and things like that.”(excerpt FG2)

 Discomforting issues

Cit. 11

“Why do they only give feedback on incidental findings when these are ‘relevant’ to my health? I want to get to know everything about my health. And, I don’t like others to decide what is relevant to my health.”(excerpt FG5)

 Wish for more supervision

Cit. 12

“Who can guarantee that the researchers using my biomaterials and data do not misuse them for their own purposes? Can I trust the supervising bodies?” (excerpt FG5)

 Phrases causing distrust

Cit. 13

“The text keeps repeating the phrase ‘we assure you… this, we assure you… that…’. This sounds too much as if they want me to believe everything they say.” (excerpt FG4)

 Biobank mistaken for “organ-bank”

Cit. 14

“The text asks me to donate ‘body materials’. Could that include an eye or my heart? So, do they ask for organ donations, too? How can I be sure, they do not take these parts of my body and give them to somebody else?” (excerpt FG2)

 “Diagnostic misconception”

Cit. 15

“I consider all incidental findings about my health are relevant to my health.” (excerpt FG5)

 Use of technical devices/videos to support written information

Cit. 16

“Couldn’t you use web applications or videos to give extra information on certain topics? E.g. one could read the text on a tablet computer and click on topics they are interested in to get more information.” (excerpt FG7)

 Dynamic presentation of information

Cit. 17

“Perhaps sum up all key aspects at the beginning of the document for everybody to read. Persons, who are interested in the whole document could then read the longer version, too.” (excerpt FG2)

 General approval

Cit. 17

“For me, this text is very understandable and easy to read.” (excerpt FG11; new participants)

 Added information box

Cit. 18

“The information box giving the most important points on the first page is very helpful and makes you want to read on.” (excerpt FG9; new participants)

 Added illustration

Cit. 19

“At first, I did not understand what happens to my biomaterials and data after I give my consent. But thanks to the illustration this is very clear now.” (excerpt FG9; new participants)

 Text-boxes

Cit. 20

“Most paragraphs are already very short and easy to understand. Additional text boxes which summarise the most important statements are just not necessary.” (excerpt FG11; new participants)

 Longer explanations

Cit. 21

“Some of the added information are too detailed and could be removed from the actual IC documents; they rather should be served as additional information for especially interested persons.” (excerpt FG8; old participants)

Cit. 22

“I actually understood for the first time what ‘findings relevant to your health’ means; but the new version is just too long for lay people to understand.” (excerpt FG10; old participants)