Table 2 Percentage of participants endorsing each measure proposed to help to trust recipients of donated DNA/medical information, overall and by country

Transparent information about WHO will benefit from the data access

61

74

68

58

69

63

32

75

59

57

61

66

55

68

61

63

73

47

68

66

70

67

62

The option to withdraw your information in the future

54

58

67

56

50

62

39

31

57

50

46

48

55

60

51

58

59

49

58

53

62

61

51

Knowing exactly who is using your information, and for what purpose

53

56

61

61

52

56

46

45

53

63

40

45

56

57

47

52

60

62

52

53

63

53

45

Transparent information about HOW others will benefit personally, professionally and commercially from the data access

49

57

62

35

51

54

38

52

41

37

56

52

42

59

45

41

61

36

55

54

42

55

53

The option to opt out of having your information accessed by other researchers

45

33

60

44

45

54

51

34

45

30

42

34

37

38

44

52

51

37

37

25

49

53

44

Details about the sanctions applicable if my data is misused by others

40

48

49

37

36

42

28

44

36

43

5

29

58

45

22

38

49

50

37

36

42

41

29

The ability to access your own DNA and/or medical information

38

40

53

51

24

47

31

28

43

37

27

30

28

46

27

45

43

52

40

43

48

42

41

A website that clearly explains the pros and cons of data access

37

38

49

32

35

40

38

38

28

29

56

29

36

35

42

31

27

28

29

30

33

46

49

Being able to communicate directly with gatekeepers of my DNA and/or medical information

27

30

37

29

30

32

24

32

28

28

13

16

17

30

29

28

35

36

29

22

28

29

26

Biographies and photos of the sorts of researchers who would access the data

21

21

17

14

21

20

34

28

19

15

31

13

24

28

23

17

16

20

19

14

13

15

23

Other

1

1

0

0

1

1

0

2

1

0

1

1

2

1

3

0

0

1

0

1

0

1

1