donor, for the purpose of transplantation. Transplantation is an operation, which involves the replacement of diseased and defective organs and tissues with healthy ones from donors. This transplant treatment aims at saving patient that can only be saved with the organ transplantation surgery. Donation of organ and tissue is the ultimate humanitarian act of charity and there are no age limits on who can be organ donor, as long as the person is healthy enough. The commonly transplanted organs are kidneys, heart, liver, lungs and pancreas while the transplantable tissues are eye cornea, bone, skins, and heart valves. Thus a single donor can save the lives of a number of people.
The experiments of organ transplantation in animals and humans’ body began in the 18th century. There are numerous failures experienced by the scientists over the years. The successful organ transplant had been done by the mid of 20th century. During the last 30 years, tissue typing and development of immunosuppressive drugs have allowed for more successful organ transplants and a longer survival rate for transplant recipients. The most outstanding development in this area was Jean Borel’s discovery of an immunosuppressive drug called cyclosporine in the mid-1970s. This drug was approved for commercial use in 1983 by United States. However, the need for organ transplants continues to exceed the organ supply. Fifteen people die each day due to the shortage of transplantable organs; and every 18 minutes a new name is added to the transplant waiting list. As medical technology is improving, more and more donors become available and thousands of people each year will live longer and better lives.
In Malaysia, it has its own history in organ donation and transplantation. Kidney transplant treatment started in December 1975 when a businessman from Sarawak received a kidney donated by his brother. In the same year, kidney transplantation from a deceased donor was performed for the first time in Malaysia. Besides that, liver transplantation surgery began in March 1995 which involved living donor and patients with family relation. The first liver transplantation between a donor and a recipient with no blood ties was successfully carried out on 3rd of April 1999. Furthermore, the first heart transplant surgery was successfully performed in December 1997, while another two cases were recorded in 1998. One of the successful heart transplant surgeries was performed on R.Sethuragnan where he suffered an acute heart disease prior to the transplant. Another recent case would be the mechanical heart girl Tee Hui Yi, who got a heart from an accident victim after one-year-wait for the organ. While she was in the waiting list, her life depends on the mechanical heart device that replaces the original fail heart, which could only last for two years. On top of that, Malaysia also has record successful transplant surgeries for some tissues such as eye cornea, bone and bone marrow. However, lung as well as pancreas transplant surgery was never performed in Malaysia due to donor unavailability and not because of the unavailability of the expertise and the needed equipment.
According to statistics from National Transplant Resource Centre under the Ministry of Health Malaysia, until 1st August 2010 there are 145,293 people pledged for organ donation. However, the number of actual donor until 1st August 2010 is 300 organ donation cases recorded with 20 cases include donation of multiple organ and tissues. In addition, 1374 successful kidney transplant cases which involved the living donation and cadaveric were recorded. Despite the high number of people pledge for organ donation, there are still more than 10,000 patients is currently in the waiting list for a kidney transplant, 7 patients are still waiting for heart transplant and 4 patients for lung transplant.
Statement of the Problem
People might hear about organ donation, but do they really know what it means to those who really need organ transplantation. According to the National Transplant Resource Centre, there are thousand of patients on the waiting list for kidney, heart and lung transplants. However, one in three patients on the waiting list dies before a donor is found. Campaigns by the government to educate peoples on the importance of becoming organ donors were launch, but most people were still reluctant to do so. Therefore this research is to study the level of awareness and willingness of UTM students towards organ donation, which is significant in saving people’s life.
Purpose of the Study
Nowadays the number of people who need organ transplantation is increasing and report shows that the critically-ill patients have to wait for years to get a suitable organ because lack of donor. Apart from that, though there were lots of organ donation campaigns organized by governments and non-government organization (NGO), people still reluctant to become an organ donor.
In response to this issue, a research was needed to assess the knowledge of UTM students on organ donation and to explore the ethics, legislation and social issues associated with the reasons people unwilling to sign up as an organ donor.
Objectives of the Study
The objectives of this study are:
To determine the level of awareness and willingness of UTM students towards organ donation.
To find out the numbers of donors and non-donors are there among UTM students.
To analyze the reasons behind people’s reluctant to register as an organ donor.
To identify the benefits of organ donation towards the individual and society.
What is the level of awareness and willingness of UTM students towards organ donation?
How many donors and non-donors are there among UTM students?
Why are people reluctant to register as an organ donor?
What are the benefits of organ donation towards the society?
Significance of the Study
The study aims to find out the level of awareness and willingness of UTM students towards organ donation. Based on the findings from the study, we can determine if there is a need to further instill awareness and willingness towards organ donation among UTM students. We are given the opportunity to channel our ideas and thoughts to the future generation. Thus, we ought to have this awareness and the responsibility to educate the Malaysian society about the importance of organ donation.
Scope of the Study
This study involved the participation of UTM students from different faculty. The respondents were randomly selected by our group, Waka-waka. The survey was conducted from 6 to 19 September 2010 through questionnaire distribution and interview. The questionnaire was distributed to 60 respondents at library (PSZ), FKE and FKM. Besides that, interview was conducted at UTM Medical Centre.
2.1.1 Ethical Issues in Live Organ Donation
Respect for autonomy means people should respect one’s decision on whether want to participant in organ donation. The transplant teams would clearly appreciate those donors that make the decision to donate voluntarily without any duress. Although clinicians practicing organ transplantation using live donors are aware by the donors, but there are donors donated their organs under coercion, to save their love ones. Institutions usually have a mechanism to protect an under pressure potential donor by allowing donor to withdraw from the donation. If a potential donor change his mind about donating an organ, his wishes will be respected. Besides that, the institution should provide the donors with adequate information about donor surgery which include the long and short term risks, to allow the donors to make a free and informed decision on organ donation. Next is the principle of justice. After one person donated his or her organ, the allocation of the organs should be fair and appropriate. The patient’s health should be taken into consideration but not influenced by other factors. The demand for kidney transplant increased but the supply remains low and this leads to phenomenon like selling organs by the poor and trafficking in organ. There were cases where rich patients often went to poverty areas to purchase organ for transplant. The commercialization has led to criminal activities and in some countries, prisoners are forced to donate their organs and organs being removed from executed prisoners.
2.1.2 Ethical Issues in Cadaveric Organ Donation
Cadaver is the main source of organ donors in the world. Consent for organ donation following death is usually given in two ways. In ‘opting in system’, a person will state his intention to donate his organs while he is alive. However, permission must be given by the immediate relatives of the deceased before proceed to harvest the organs. In ‘presumed consent’, a person is deemed to have consented if he had not clearly stated that he did not wish to donate his organs. In the ‘opting out system’, one has access to all the information required and he decided not to donate his organs without fear of being ‘blacklisted’. However, removal of organs from the dead should be carried out with due care as respect is a basic part of our religion and culture. On the other hand, most of the doctors agree that brain death is the final criterion of death. Besides that, the persons who in charge of the death pronouncement must be work independently.
According to Malaysian Medical Council (MMC) guideline 006/2006,
“In cadaver organ transplantation, the definition of death is crucial as organs are best removed when the heart is still beating but the patient is dead. Such a situation is called brain death. It is important that pronouncement of death is done using rigid criteria and persons performing tests to determine brain death are independent of the transplant team.”
Some countries still lack legislation for brain death and transplantation. These governments should have appropriate legislation and oversight mechanisms in place besides seeking ways to optimize the donation of organs. According to the Star Publications (2008), our health minister Datuk Liow Tiong Lai said that the government is looking for convenient ways to ease the donor applications. Unlike Singapore, the government has laws making its citizens to become donors automatically. As endorsed by the 63rd World Health Assembly (2010), it is noted that over the past 17 years the Guiding Principles on human cell, tissue and organ transplantation have greatly influenced the legislation all around the world. They are intended to provide an orderly, ethical and acceptable framework for the transplantation processes. According to the Epoch Times (2010), Datuk (Dr.) Harjit Singh, President of The Malaysian Society of Transplantation said that Malaysia should have a regulatory and legislative framework in order to safeguard the interest of its citizens and prevent organ trafficking and transplant tourism from flourishing in the country besides creating an understanding of the difficult issues of Organ Trafficking and Transplant Tourism. Dr. Harjit added that organ donation and transplantation in Malaysia is currently governed by the Human Tissues Act 1974, which is mainly concerned with organ donation by deceased donors.
The major reason why there are still a lot of people in waiting list for organ donation is because the refusal by family members of registered organ donor to give their consent.
According to The Star (2003), Health Minister Datuk Chua Jui Meng said that the refusal by family members of registered organ donor to give their consent is a major reason for low percentage of successful organ donations.
Besides, New Sunday Times (2005), Annie Freeda Cruez stated that, the refusal by the registered donor family to give their consent had made the members of IJN (Institusi Jantung Negara) and Kuala Lumpur Hospital Cardiothoracic Transplant Team returned disappointed on their way to harvest organ.
This section discusses about the methodology of the research. The main purpose of the research is to find out the level awareness of organ donation among students in Univesiti Teknologi Malaysia (UTM). In order to assess and evaluate the reason why people reluctant to register as an organ donor, the main campus of UTM situated in Skudai area with 16000 students’ population was chosen. Data for the research were collected through questionnaire and interview.
3.2 Research Instruments
This research utilized both the quantitative and qualitative research methodology. The instruments used to collect the data were questionnaire and interview. The set of questionnaire used in the research containing 15 questions. Different question-types, such as ranking, yes-no, listing, category, open-ended and scales were used in the questionnaire. The questionnaire was piloted to a group of 10 students to assess its validity before it was distributed.
The qualitative data for the research come from interview. The interview was utilized to gather more information for our research. One respondent was involved in the interview, which is Dr. Zaleha from UTM Medical Centre.
3.3 Respondents of the Study
The respondents of the study were undergraduates from different years and courses at UTM. In September 2010, a total of 60 questionnaires were distributed to students at different faculties of the university and all the students from various faculties at UTM returned the questionnaires. Of these numbers, 25 were male students while the rest 35 were female. One doctor was interviewed to provide in-depths information about the topic.
3.4 Research Procedure
Before the actual data collection period, a pilot study was conducted to assess the validity of the research instrument. A total of 10 students were involved in pilot study chosen at random at various places of the university.
During the actual study, appointment was set for the interview with a doctor at UTM Medical Centre and the questionnaires were distributed to the students at various locations in campus, such as library, several cafeterias and bus stops. Respondents were approached with a warm greet and intro to our topic, before the questionnaire was given to them. The completed questionnaires were collected on the spot by given enough time to them to answer it.
3.5 Data Analysis
To analyze the data, a total of three variables were taken into consideration namely study purposes, numbers of organ donor and the factors that influence their decision to become a registered organ donor. Data were entered in to the computer using Microsoft Words and Excel. Results were presented through frequency counts and other descriptive statistics. The interview data would provide extra information regarding this topic. The data was transcribed. The analysis of the interview data went through the coding technique using identification of categories of patterns and themes that emerged from the analysis.
FINDINGS AND DISCUSSION
This section discusses the results of the research on the awareness of organ donation among students in UTM. The findings will be divided into important topics found from a survey received from 60 UTM students.
4.1 Level of Awareness and Willingness
The level of awareness of organ donation among UTM students is relatively high. Majority of our respondents ever heard of organ donation. Most of them manage to answer the question asking their opinions on which organs can be donated correctly. That is almost 90 percent. Besides, there are quite a lot of respondents who are aware of some associations that are related to organ donation in Malaysia. That is about 37 out of 60 respondents. The percentage is 61.67 percent which is almost the same as those who are willing to become organ donor (66.67 percent). That means those respondents who are willing to donate organs are aware of the associations that are related to organ donation in Malaysia. However, there are still a lot of effort that needs to be put by our government and also the Non Government Organization (NGO) to help raise up the level of awareness of organ donation in our society.
4.2 Number of Donors and Non-donors
FIGURE 1.0 NUMBER OF RESPONDENTS
From our findings, there are only 5 donors and the rest are non-donors. It is quite depressing to know about it. Hence, more campaigns should be carried out to increase the numbers of organ donors in Malaysia. As we all know, the organs are very important and most needed by patients to continue their lives. By being an organ donor and donating one or two organs to the needed ones, we can actually save a person’s life. We also think that the lack of information on organ donation may lead to the low numbers of organ donors in Malaysia.
4.3 Reasons for Not Willing to Become Organ Donor
FIGURE 2.0 Reasons for Not Willing to Become Organ Donor
There are 20 out of 55 of non-donor respondents are not willing to register as an organ donor. A total of 38 percent of the respondents stated that personal reason is the main concern for them. This is because they are scared that they will get infected after the operation. Some of them think that it is time consuming when dealing with the organ donation procedures. A total of 22 percent of the respondents think that family’s obligation is also a reason for them. The respondents are very concern about their parents’ decision mainly because they are the only child in the family and they do not want to rebel against their parents. Another 20 percent of the respondents think that religion is the deterrent for them. This is because their religion does not encourage them to do so. In some religions, they encourage people to retain the perfect body just as what they have before they come to this world and die. About 10 percent of the respondents think that ethical issue is the reason for not willing to become an organ donor. Another 10 percent of the respondents think that misused issue is the reason for them. They are aware of the irresponsible people who sell the donated organs in the black market. If this happens, everything that has been done by the organ donor himself and the Health Organization is wasted.
This research has investigated the level of awareness and willingness of UTM students towards organ donation. Primary data were collected by randomly distributing questionnaires to 60 students. As mentioned earlier in the introduction, the purpose of this study was to evaluate UTM student’s awareness towards organ donation, count the number of donors and non-donors, to find out the reasons behind people reluctant to register as an organ donor and benefits of organ donation towards individual and society.
The following conclusions can be drawn from the study. From the data obtained through this study, it can be concluded that generally UTM students have a high level of awareness on organ donation. A total of 61.67% of the respondents know the existence of the association that is related to organ donation. The percentage is almost the same to 66.67 percent of the respondents who are willing to become organ donor. That means those respondents who are willing to donate organs are aware of the associations that are related to organ donation in Malaysia. In contrast, surprisingly there are only 5 out of 60 respondents are registered as organ donors. The main factor that most of the respondents not willing to register as an organ donor is due to their personal reason. That is 38 percents. In other words, they are afraid to get involved in the transplantation operation that might lead to infection and think that the procedures are time consuming and complicated. However, majority of the respondents agreed that organ donation is significant in saving people’s life.
Overall, the findings of the study indicate that most of the UTM students lack of general knowledge and have a misperception on organ donation. Hence they tend to disregard the importance of it. However, these findings are only true for UTM students and cannot be generalized to other universities. The same study needs to be conducted with students from other universities to see if there are any similarities regarding the organ donation issue, especially about the level of awareness.
6.1 Recommendations Based on the Findings
Based on the findings and conclusions of the study, here are several recommendations to be considered. First, more interesting campaigns and event should be held to increase the awareness of organ donation among UTM students. Talks or seminars must be attended by UTM students to obtain the correct and accurate information about organ donation. Second, organ donation registration form should be available at popular location in university area and the procedure to sign up as organ donor should be easy and simple.
Recommendations Based on Future Research
It is recommended that further studies to be carried out on students from other universities or public since this study had only focused on UTM students so that any similarities can be found in the findings. Furthermore, further research may explore the level of public awareness and their understandings regarding organ donation. Lastly, it is important to investigate the reasons why they reluctant to become an organ donor so that appropriate solutions can be done to increase the number of donor.