Internet and social media is touching all areas of life. How could blood banking remain untouched. Numerous blood donor registries have mushroomed with claims to provide easy access to blood donors at the time of need. Fancy solutions making intelligent use of social media and vicinity based search have been in the news. Promoted by individuals coming from prestigious academic institutions and decorated by national and international awards and recognitions, these solutions appear promising. In our recent interactions with some of these organisations and the blood bankers, we have uncovered a disturbing commercial angle that could adversely impact public confidence in voluntary blood donation as a whole.
Exploitation of donor databases
The bad news is that unlike the portrayed image of being transparent and impartial organisation serving the needy, several new donor databases are getting into unethical alliances with certain institutions. We came across portals which are strongly marketing themselves to the blood banks. There have been attempts to get into agreement to provide blood donors against a "service charge". Another portal we came across had a carefully worded message on the website that "currently" they are providing services free of charge. Is there a reason to believe that once enough donor register they won't switch to a remunerative model?
What is happening is a big step backwards - violating the essential ethics and laws upon which the donation of human tissue for preservation of life is based.
“If blood as a living human tissue is increasingly bought and sold as an article of commerce and profit accrues from such transactions then it follows that the law of commerce must in the end - prevail" - Richard Titmus (The Gift Relationship)
A donor registers on a website with a belief that they shall be called in to donate blood whenever someone needs help during emergency - completely oblivious to the underlying clause of financial transaction between the website and the hospitals. The donors are unaware that a blood bank which pays service charge may be considered more suitable location to direct for donate blood. The operating model of these websites amounts to commercialization of blood donation - which is a direct violation of the Supreme Court orders. The design of this scheme is clearly fraudulent and amounts to cheating.
There are some critical issues here. If these websites were to share with the donors that there is a so called 'service charge', will the donors continue to register with them and donate blood? Secondly, if these sites charge for providing blood donors, is it not implied that the supply of donors will be biased towards corporate and private setups - which by design have the capacity to pay? Thirdly, what is the yardstick to define 'service charge'? Is the service charge not a direct replacement of the payment that touts seek for providing donors? Then is it not implied that every evil that is associated with professional blood donation may find its way back into the blood banking system? Finally, if voluntary donors were to know that blood banks pay certain individuals to get blood donors then would they continue to trust blood banking services and donate blood voluntarily?
Any attempts to monetize blood donation for profit needs to be opposed vehemently in the interest of voluntary blood donation and to safeguard human beings from exploitation. The success of any of these schemes will be a big let-down for the truly voluntary, tireless effort that has been put into the voluntary blood donation movement. These attempts threaten to erode the hard earned confidence in general public built by the efforts of the blood banks and the voluntary organisations over past decades.
Attempts of commercial exploitation of blood donation have been known and reported in the past. These have been driven by crooks and have known to be run from shady corners of town. What is different this time is the brazenness of these groups and the involvement of the financially and educationally strong organisations.
While we should have been working to convert each of the registered "waiting donors" (one waiting to be called to donate blood) into regular donors from existing databases, this new-found commercial interest needs to nipped in the bud. Blood bankers must be careful in getting into a relationship with organisations promising donor supply and must demand commitment to keep the operations not-for-profit even in future and throughout their operations. Blood bankers must not fall prey to the attraction of short term gains for self and endanger the credibility of blood banking as a whole. The blood banks who are using public databases as false fronts to encourage donations in their own blood banks must also be watched out for.
We appeal to blood bankers across the country to counsel and guide the people associated with the databases into proper understanding of the social-economic and legal issues around blood banking. There is no doubt about the power of social media to promote causes and influence human behaviour. Blood banking must embrace it , but with the responsibility of not compromising the essential ethics of something as sensitive as voluntary blood donation.
Do blood donor databases induce negative behaviour?
When a healthy, motivated and willing individual sets out to find ways to help save lives, they are likely to bump into one of the on-line databases. By registering on these websites they immediately get a sense of gratification and are given to understand that they will be called in to donate blood when needed. Is this the best thing to happen in the interest of the voluntary blood donation movement? Is this not inducing the donor into believing that one should donate blood only when a patient in some hospital is waiting to receive blood from them? Such donors take pride in propagating that donation is best done during emergencies and even question the truly voluntary non-remunerative blood donation in camps. Does this helping make a person a regular voluntary blood donor?
“Encouraging public to donate blood in for emergencies equates to digging a well in the event of fire."
The demand to donate during emergencies is a direct expression of lack of confidence in blood banking. It violates the ethics around of human tissue donation in general and blood donation in specific and compromises anonymity between the donors and the recipient. Blood donor database administrators do not shy away in admitting that the total donations they enable in a year is a small fraction of those who registered on their databases. Should it not be concluded then that a blood donor database actually converted the intent of donating blood of each of the registrant into a wait for a perfect moment when someone's life hangs in a balance and this coincides with their availability? If they had donated in the very first occasion when they got interested in blood donation and then repeated the donations periodically, the eventual benefit to the society and relief to the needy would have been greater by orders of magnitude.
Blood on shelf - not in veins - saves lives!
It is not always that there is enough time to find a donor, get a donation done, process and test the blood unit and make it available for the patient. In emergency situations what makes the difference is the number of units of tested blood available off the shelf - not the number of willing donors outside the blood bank. Encouraging regular voluntary non-remunerative blood donation is the cornerstone of modern blood banking.
- Let's keep it regular - and not an unending wait.
- Let's keep it voluntary - and not under the coercion of the fact that refusal to donate could have implications on someone’s life.
- Let's keep it non-remunerative - and not enslaved by the desire to receive personalised gratitude from the family.
It must be mentioned here that in an imperfect blood banking system like ours, emergency blood donor database have saved numerous lives in the past. The enormous contribution of pioneers like Mr Alphonse Kurian from Lions Blood Line, Mr Khushroo Poacha from India Blood Donors and many others cannot be ignored. Whenever blood banks have failed to ensure that safe blood is available off the shelf for everyone, the tireless efforts of several organisations have helped bridge the crucial gap. However, it must be recognised and admitted that the need to maintain an emergency donor database is nothing to celebrate and promote. It is an indicator of the gap in supply which everyone involved with modern blood banking must strive to fill by encouraging donors to donate blood regularly. The message should be clear:
“Don't wait for the call! - Donate blood as soon as you can!"
'The Red Market' is a must read book written by Scott Carney - an investigative journalist who explores the business of human tissue across the globe including shocking stories from India.
Here is what prominent people associated with voluntary blood donation had to say about the subject explored in this article.
“Its very sad that educated people are using technology to make money out of helping patients find blood donors. They are no less than touts. www.Indianblooddonors.com was born in 1999. We do not take donations or money . We have worked into making it a Zero Sum Based Initiative. Where no money is spent to run the system. And it is growing everyday. We have used the best technology like IVRS to connect people from the grassroots to our blood donors. We have defied the biggest business schools in the country who say that one must have a revenue model to run a successful social enterprise. We are not an organisation but big organisation like Microsoft India , Awaaz De , Mindstorm Software , Net4India , Innoz, TxtBrowser have joined us in our mission of saving lives all over the world .”
- Mr Khushroo Poacha Founder www.indianblooddonors.com
Safe blood comes from a safe donor. Safe donor is one who donates voluntarily for an unknown patient. Current day databases that are mushrooming in the country are breaking this anonymity between donor and recipient and are eroding the very concept of Voluntary Blood Donation. All these years we used databases built by good Samaritans to meet our emergency needs when camps were difficult to get. But any attempts to use emergency data bases routinely will harm voluntary blood donation. The donor who registers in such databases has a false sense of satisfaction that he has done something good and stays away from blood donation drives( camps) believing that his/her blood is precious and in the process does not donate at all. Money charged by these agencies now or in the future in the garb of service fees may prove to be nothing but paid donation. Again having tried one such database the benefits are minimal and are equivalent to getting one camp in a month. Mushrooming of such database may do more harm than good. If at all we have a database, it must be a single national database, authorized by NBTC / NACO / DC and must be completely free from service charges. Expenses incurred for this should be borne by the GOVT / NGOs. We already have a fragmented Blood Transfusion system. Let us not fragment our donors as well , with too many databases.
- Dr Shivaram, Consultant and Head, Department of Transfusion Medicine, Manipal Hospitals, Bangalore.
Databases
For any planner in the voluntary blood donation movement databases of donors, as practised, are regressive. In a way, I would call them as an escapist attempt. They are conceived and built by persons who have good intentions, but do not address the root cause. They can be compared with people who keep filling water in a bucket, which has a hole, without attempting to plug the hole. What is worrisome is that they, unwittingly, are encouraging the presence of the hole.
Many of these databases take heart from the positive feedback that they receive from beneficiaries of their handiwork. In this euphoria they do not get down to analyzing if there was a real benefit. In Mumbai, our experience clearly shows that databases have been used in most cases, to call donors to replace the blood that has been already transfused to the patient. That is why one comes across, in numerous situations, demands which carry the following request – “Urgently required. Four donors. Any blood group will do”. In other cases, donors from databases have been called to donate blood due to the refusal by the hospitals to take blood from a blood bank in-spite of the required units being available. The patient is firmly told that this is a policy of the hospital. The Hospital, in blatant violation of the National Blood Policy, not only shifts the responsibility of organizing blood to the patient, but also insists on donors and not blood units. Why is it that these databases are sought by individual patients and not by the hospital? There is a clear abdication of responsibility by the Hospital, the propagation of which is indirectly aided by donor databases.
In many cases of replacement donation, which is catered to by databases, the donor is called upon to ensure that patient does not forfeit the deposit amount that is charged in the event of the transfused unit not being replaced. In other words, the donor goes to donate blood not to meet an emergency, but to reduce the financial cost to the patient. This could be termed as a commercial donation. There could be a situation in the future of a patient willing to pay databases, provided the charges are lower than the previously mentioned deposit.
Donors are led to believe that they will be called upon to meet emergencies. This is ridiculous. In a genuine emergency, there is no way that the hospital or patient can access a database, identify a donor, wait for him to turn up, hope that he is found eligible, get him to donate blood, get the blood tested for TTIs, and provide the necessary component to the patient. In a genuine emergency, the same hospital which normally insists on donors, will agree to accept blood from a blood bank. Anybody looking at a database of donors to meet a genuine emergency is digging a well after the house is on fire.
The objective of any efficient blood transfusion service is to ensure that there is a positive balance of blood units in blood banks at all times. This, while everybody agrees will be possible if people donate blood when they get the opportunity to do so. Databases have the inherent assumption that the donors listed on it will get a call. In other words, the donor does not donate blood till he gets a call. This also means that by putting him on the list you are asking him not to donate blood. You are actually contributing to creating the shortage of blood. A genuine donor should not wait for a call. He/She should donate blood when eligible by going to the nearest blood bank or blood camp. Makers of databases are creating a wrong concept of a blood donor. They should realize that a blood unit in hand (in the Blood Bank) is worth a hundred in the bush (on databases). If one were to take a hard look at the number of donations by people registered on databases, it will be apparent that a large number of them have not donated blood for extended periods. It can be argued that the number of donations would have been higher if those listed were explained the concept and given the choice of the time and place of donation. And even in the case of those who have responded to calls, most of the blood collected has not catered to any emergency. In fact, in many cases it has not gone to the patient for whom the donor has donated. Makers of databases should at-least accept that their concept is, at best, a emotional tool to get a person to donate blood. While this may serve the purpose of getting a person to donate blood, there is an element of dishonesty with respect to the assumption by the donor of the beneficiary and the actual recipient of his donation.
Databases have therefore contributed to :
- Propagation of the abdication of responsibility by the Hospital.
- Creating a shortage (emergency) by building databases and asking people to wait for a call.
- Increasing the risk of attaching a commercial value, in many cases to the act of blood donation.
- Wrongly defining the concept of blood donation. A true voluntary donor is one who does not wait for a call, and donates blood without knowing the identity of the recipient.
The way forward is to
- Estimate the need for blood and its components in the city.
- Organize blood donation camps throughout the year to give convenience to the donor.
- Have a system of inviting donors to come routinely to blood banks for blood donation.
- Network between blood banks to balance the peaks and troughs in individual blood banks.
The Supreme Court’s intervention led to the formation of the National Blood Policy, with the objective of ensuring adequate supply of safe blood and its components through voluntary, non-remunerated, regular blood donors. The implementation of the National Blood Policy should be our priority. We should work towards success in implementation of the policy rather than develop systems which assume and perpetuate failure.
- Mr Vinay Shetty Vice President Think Foundation, Mumbai
Messages have been included un-edited. We welcome any more comments from our readers on the subject which we will be happy to publish in the next issue.