Home' Trinidad and Tobago Guardian : November 10th 2013 Contents A16
Sunday Guardian www.guardian.co.tt November 10, 2013
YOUR DNA WILL BE STORED FOREVER IN A FOREIGN COUNTRY:
are the citizens of T&T ready for this?
MBBS, MRCOphth (Lond), CCT (Lond), FRCOphth(Lond)
Member of the International Society of Glaucoma Surgeons.
NESTT (National Eye Survey of Trinidad and Tobago) is a project supported by the Ministry of Health and University of the West Indies. Unfortunately, NESTT is deter-
mined to collect thousands of DNA samples of citizens and store them indefinitely for unspecified tests at a facility in the USA despite professionals and citizens express-
The International recommendations on DNA banking are: public education and opinion; legislative framework to protect patient's privacy and safeguard against genetic
discrimination; overseer by independent governance bodies to protect against misuse or coercion; ownership transparency (ie who will own the DNA Trinidad & Tobago,
USA or UK); and mandatory counselling if genetic studies are conducted in children. NESTT Committee has provided none of the above for citizens of this country.
Instead, they have done the opposite and are now trying to retrace their steps.
A DNA biobank is an institution that stores human DNA. There are International recommendations that need to be followed to ensure the citizens are protected. The rec-
1 Public consensus/consent- The public/population should have the opportunity to be informed, to discuss and determine if bio-banking is the correct decision for its
citizens. Citizens must be aware of both the risks and benefits of DNA banking; once the consensus is determined and agreed to banking, then laws should be enacted.
2 Legislature in parliament will be discussed and voted on regarding specifics of the banking. The laws protect citizen's privacy and from discrimination (insurance
companies) and misuse.
3 Independent, unbiased, governing bodies are appointed- These regulate and monitor the use of the DNA and safeguard citizens to prevent coercion, unauthorized
use and unethical research.
4 Biobanking is very expensive. It is important to note, countries that have banks include Germany, USA and Iceland. These countries have healthcare systems that
provide accessible, equitable, quality care to patients. However, give the current health system in Trinidad and Tobago, is DNA banking in the best interest of the
public? Also, it will not serve to reduce waiting times for surgeries, it fact it will divert funds from more important areas.
Please note, I actively encourage research but it must be as per International Mandates. I would like to share questions I have been asking NESTT Committee for the past
1.5yrs but have not received satisfactory answers. They are as follows:
1 Who is funding NESTT and what is the budget? Is it tax-payers dollars?
2 How is this going to improve eye care in Trinidad and Tobago?
3 Do we not have the local services available in this country rather than source expensive International collaborators?
4 Why is a genetic study required; how much will this cost; could this not be used more effectively to help patients now?
5 Who has been trained to take informed consent from me or my child even though he/she is 18yrs (legal age and mental ages are different and culture specific)? Will
this be done by trained medical staff?
6 What genetic tests will be done? Is it my right to know this?
7 What counselling is in place if I am found to be high risk? How will affect my family?
8 Will NESTT protect me or my family from genetic discrimination?
9 How will this affect my insurance applications/claim in the future?
10 Does T&T own the DNA or is it foreign property? Do we have documentation of this?
11 Why is it stored offsite and what is the cost per year?
12 Who appointed NESTT governance and who are the members? Are there any local doctors, if not they why, are they unskilled, incompetent or not required?
13 What are the long-term implications of indefinite storage of DNA, how will I know it will not be abused?
14 If my results show I am a high risk of diabetes mellitus, glaucoma or others and the insurance companies refuse to cover, will NESTT committee address these issues?
15 These studies generate lots of grant, will I be privy to any reimbursements if the international/local institutions benefit or is it unilateral?
What are risks of DNA testing?
The risks need to be discussed and freely available to any member of the public. International Guidelines do not recommend indefinite storage or DNA testing in children
in the absence of genetic counselling.
Also, though you may be told that you can withdraw from a study, once the data is analysed, withdrawing the data is almost impossible. Once you donated your DNA, you
have given up the rights to it ie it is no longer your property.
Also, you must be aware that ABSOLUTE privacy cannot be guaranteed due to the unique nature of DNA (ie it belongs only to you); hence the importance of legislative and
ethical framework. Once you donate your DNA it can be kept forever, you will be at risk of loss of your identity and can be subject to discrimination if there are no laws to
1 Discrimination- you or your child can be discriminated by employers, education systems and insurance companies. Note the latter, for example, if the population is
found to have a very high risk of diabetes mellitus or glaucoma, insurance companies can opt not to insure for these conditions.
2 Forensic data- following a subpoena, the policing authorities can request your DNA without your permission.
3 Paternity issues, ancestry can become a source of family discord.
4 No absolute guarantee of privacy, risk of misuse and abuse if your DNA is banked. For example, the Havasupai Indians were invited to have their DNA studied for
diabetes mellitus. Then as time passed, researchers changed. The result was the researcher conducted studies on the schizophrenic gene, unbeknownst to them; of
course, they felt violated and stigmatised.
5 The results can affect your child's future and future generation 20yrs from now.
Please feel free to visit the website at www.concernedcitizentnt.com and email your thoughts to firstname.lastname@example.org
Thank you for your attention.
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