To assess the attitudes of Irish patients attending a pigmented lesion clinic and healthcare staff employed in an academic hospital to biobanking, a quantitative and qualitative study

To assess the attitudes of Irish patients attending a pigmented lesion clinic and healthcare staff employed in an academic hospital to biobanking, a quantitative and qualitative study

Biobanking research
Thank you for participating in our survey. The results of this survey will remain anonymous and your participation or answers will not impact your employment in the Mater Hospital in any way.
What age are you?

18 years or younger18 - 35 years36 - 65 years>65 years
What gender are you?

MaleFemaleOther
What is the highest level of school/education you have achieved?

Primary schoolThird level education/College/UniversityMasters/MD/PHDSecondary schoolOther
4. Are you a healthcare worker/ do you work in a hospital?

YesNo
If yes, what is your role?

Secretary/administrationNurseDoctorAllied healthPorterScientistResearch staffHealthcare assistantCatering staffEducationSecurityCleaning staffOther
Would you consider yourself a religious person?

YesNoNot sure
Do you have health insurance?

YesNoNot sure
Do you attend private healthcare facilities/services/consultants for health reasons/services?

YesNoNot sure
Do you attend public/teaching hospitals for health reasons/services?

YesNoNot sure
10. Do you have a medical card?

YesNoNot sure
Research

Medical research means investigations, experiments, and studies to discover, develop, or verify knowledge relating to the causes, diagnosis, treatment, prevention, or control of human physical or mental diseases and impairments.
Have you ever participated in medical research before?

YesNoI was invited to but did not participate
Has any member of your family ever participated in medical research?

YesNoNot sure
Have you ever been diagnosed with a skin cancer?

YesNoNot sure
Have you ever been diagnosed with any type of cancer?

YesNot sureNo
Has any member of your family ever been diagnosed with any type of cancer?

YesNot sureNo
Have you ever had a skin biopsy or skin excision?

YesNot sureNo
If you have had a medical procedure that involved removal of tissue, was this a positive or negative experience?

PositiveNeither positive nor negativeNegative
Has your experience of healthcare in Ireland been largely positive or largely negative?

PositiveNeither positive nor negativeNegative
In general, do you think medical research, conducted in Irish hospital’s is a positive thing or a negative thing? Example: the effects of blood-thinners in patients who have been diagnosed with COVID-19.

PositiveNeither positive nor negativeNegative
Do you think genetic research is an important part of Irish medical research? Example: the link between certain cancers and people’s genetic make-up.

YesNot sureNo
Biobank

In the following section, we are going to ask you some questions regarding “biobanks”. Biobanks collect human biomaterials (e.g. blood, urine or tissue samples), link them with selected personal and medical data (e.g. age, gender, blood values, clinical history) and store them for a period of time.
Patients can either provide samples when biomaterials are left over after medical treatment in a hospital, or they can directly donate biomaterials to a biobank. The biomaterials and data in biobanks are used in medical research projects aiming to improve prevention, diagnosis and treatment of diseases .
Have you ever heard of a biobank before this questionnaire?

YesNot sureNo
If yes, where did you hear about them?

College/ UniversitySocial mediaNewspapers/booksHospitals
Having read the above text, what is your initial impression of biobanks?

PositiveNot sureNegative
Does the healthcare facility you work in collect specimens for the purposes of biobanking?

YesNot sureNo
Would you help to recruit participants in your healthcare facility to donate to biobanks?

YesNot sureNo
Do you think biobanks are an essential part of medical research?

YesNot sureNo
Have you ever donated genetic material for the purposes of research? (eg. Blood sample, tissue specimen)

YesNot sureNo
Would you be willing to donate tissue or blood samples to a biobank if those materials were left over after medical treatment in hospital? The samples would be linked with some personal data (e.g. your age, gender) and with selected medical data (e.g. blood values).

YesNot sureNo
Would you be willing to donate an additional blood sample, purely for the purposes of research, in addition to your tissue sample?

YesNot sureNo
Would you be willing to donate a skin tissue sample for research only purposes? (ie. a skin biopsy/skin excision that was not necessary for health reasons)

YesNot sureNo
Would you be willing to link this research data about your sample to your medical records file?

YesNot sureNo
Would you encourage a family member to donate their specimen to a biobank?

YesNot sureNo
Would you be willing to donate a relatives specimen to a biobank, on their behalf? (For example: if they were too unwell to consent or had passed away)

YesNot sureNo
Would you be willing to donate to a biobank if the specimen was sent abroad?

YesNot sureNo
Would you be willing to donate to a biobank if the specimen was kept in a different county in Ireland?

YesNot sureNo
Would you expect financial reimbursement for your sample if donated to a biobank?

YesNot sureNo
Do you think if you refused to donate your sample to a biobank/medical research that it may negatively affect your care?

YesNot sureNo
Would you donate a sample if there was no current ongoing research project it would be used in but may be used in future? (ie. if it was stored for a period of time before it was used)

YesNot sureNo
Would you only donate your sample to studies that had ethical approval and were pre planned?

YesNot sureNo
Have you ever donate your genetic information for commercial reasons? (eg. To find out more about your heritage/family tree – ancestry.com etc)

YesNot sureNo
Would you be willing to donate your genetic information to a commercial company to gain knowledge about your family tree/genetic information?

YesNot sureNo
Would you want to be informed if your specimen was disposed of after the research study finished?

YesNot sureNo
In Ireland, researchers are not permitted to collect specimens for biobank research unless they have a pre-planned project with ethical approval. If they plan further research using samples that have already been obtained they must consent patients again for the new research project. This is called reconsent.

Some countries use broad consent where donors can actively consent once for the current study and all future research within a broad field.
Do you think you would prefer:

Broad consentReconsentNot sure
What would motivate you to donate your sample?
Should be Empty: