Age-G
Informed consent
Respect-C Trust-A
Cultural Sensitivity-
D Family Privacy-1
Clan information-2 The right to control how
medical records are shared and accessed-B
Authority -1
Autonomy -2
Control-3
Consent Preferences-E
Verbal consent 1
Written consent 2
Need to be asked -3
Depends on who will be accessing them -1
Consider how participants feel about researches accessing the information-1
Respect family/clan-2 Anonymity
Need to be asked every time -1
Once-2
No need to ask everytime-3 How
freq uen tly r ese arc her s
nee d t o o bta in permi ssi on -F
2
“Accessing my medical records as long as it doesn’t identify me as the person, I really wouldn’t have problems with it. As long as they don’t know whose medical record it is, then there is really nothing that scares me.”
“But it boils down to… there is no guarantee that they will remove personal information and that they will not be able to link it back to me. What guarantee do I have that my records will be anonymised when researchers access them? Unless I have proof that they are guaranteeing that the information is anonymised; at least someone has to be liable if this turns out nasty.
“Maybe the question should be after anonymity is guaranteed why should anyone care? What people fear is not that people out there will know that there is HIV. What people fear is that people out there will know that they in particular have it”
“But sometimes names are necessary because they might need to do follow-ups. How are they going to do it if they do not know your name and where you stay? For me, if I’m eligible to be part of your study you can use my records but you need to ask me”.
“If the system guarantees anonymity, it is all fine by me. I don’t have a problem with it."
The right to control
3
Informed Consent
“In this way I feel like I have a bit of power to what happens with my records. Just like the HIV test, so if one doesn’t want their records to be used that’s the only time they can have to say no.
“This thing of them just coming to get information is
disrespectful…” -1pg
“Yes, I think we should be asked because sometimes we might have these genetic diseases that are supposed to be our own, so it should be kept within the family/ clan and we can be the only ones who have to know about it. So if they just take the records without our approval it means that they are exposing our secrets without us knowing about it.”-2pg
“In my family when we have an illness, it must be kept amongst us until we are ready to talk about it.
Such that when we go to the doctor, we want him to help us before our issues become public knowledge. That’s why we need to be asked first, because that disease might be peculiar to us only and people in the community might even know that they are talking about us in that research, because the whole family might have symptoms of the disease. That’s why there is a need for them to get our consent first, because by that time we will be at peace knowing that people might even know that our clan was included in the research.”- 1pg, 2pg
“I will need to sign somewhere because when something goes wrong the researchers can also have proof that I agreed for my records to be used”2
“If you just ask me and I say yes verbally its ok really, I don’t really care to sign
somewhere, because I will be aware, and trust me, I will be aware that I have consented for the records to be used.”1
“At least they should have some form of consent procedure like the moment you go to your doctor or hospital, they should have a section where they will be asking for your consent for the records to be used.”-2
“They should at least ask for consent once in a while…I don’t want to be asked every time really, but at least I should consent to it. It would be unfair for them to use my records continuously for different studies.
It should be periodic.”-3
“Every time a new research that wants to use my medical records, I should be asked for consent.”-1
Respect Cultural sensitivity Consent preferences
How frequently researchers nee to obtain permission
4
Positive aspects of
disseminating medical records
for research
AltruismImportance of research Research purposes
Reservations
Access to medical records by third parties
Social harms
Misuse of personal health information Contents of medical records
Need for such research-1
Knowledge of research-1
Impact of research-2
Importance of knowledge-3
Advancement of knowledge- 4
Help-1
Do not need to benefit from it-2
Sensitivity of information in records-1
Identification-2
Linking back to individual and community at large-3
Access by outsiders-1
Confidentiality agreements-2
Stigmatisation-1
Prejudice-2
5 Positive aspect of disseminating medical
records for research
Research Purposes Importance of research Altruism
“If we are to look at the current situation in South Africa, most research centres are focusing on issues surrounding HIV/AIDS, this can be attributed to studies like this which use people’s medical records to see what is really going on in KZN. Such that when the research is out, the Department of Health has an obligation to devise a plan to counter attack this. We also have funders who are supporting this fight against AIDS because it has been made public that we are struggling with this disease.”
“It would not make sense for one to demand a public health care system that is functional and yet not allow researchers to use the stats (statistics) and records to better that system.
Why can’t the information actually be made public?”
“That would be very helpful because people will then know their chances of suffering from the disease, know the causes and prevention as well.”
“Because, like I was saying that, this research will only find more relevance the more we
computerise this part of the world and I want to get to why it would matter what the information would be used for. Why can’t the information actually be made public information? If you think about it… health is a public good and knowing the stats about different places helps.”
“I think if the research is going to help more people, greater good issue. We can even limit privacy if it’s going to be helpful”.
“It would not make sense for one to demand a public health care system that is functional and yet not allow researchers to use the stats and records to better that system.
…
The clinic in question, pharmaceutical firms, anything from drug distribution planning to use on what awareness schemes are needed where really the debate of what the information is used for is obiter, if not useless, if we are to assume that it is just records that have been de-personalised.”