Porcine value is more than meats the eye in xenotransplant innovations. (Source: Boudewijn Berends, Flickr)

Using animal organs and tissue in lieu of human ones?  Yes readers, this is happening. Officially the procedure is called xenotransplantation, and its official FDA definition states:

Xenotransplantation is any procedure that involves the transplantation, implantation or infusion into a human recipient of either (a) live cells, tissues, or organs from a nonhuman animal source, or (b) human body fluids, cells, tissues or organs that have had ex vivo contact with live nonhuman animal cells, tissues or organs.

Though most cases of xenotransplantation are still in laboratory-testing phases (e.g. pig to non-human primate, rat to mouse, etc.), there are some cases of non-human animal to human xenotransplantation.  These cases mostly being the use of pig heart valves to replace human ones, and using pig skin on burn patients.

Xenotransplantation expert and doctor David Cooper whom we’ve highlighted in TranplantInformers previously is a well known researcher in this field . He is working to genetically engineer pigs to have a greater defense against the human immune response, also known as organ rejection.  Other new procedures to look for are using fetal pig stem cells for cell regrowth in humans, and potentially using primates as human organ sources.

The idea of xenotransplantation is not a new one, however recent technologies and the constant need for organs have made xenotransplantation a more realistic practice.  As with any new technology, the ethical issues surrounding xenotransplantation are astounding, likely because there are so many factors in play.  In addition to patients, doctors, hospitals, insurance companies and other potential stakeholders to consider, there are the animal donors. After a basic web search, Stanford’s website was the only one I found that dealt with how the pigs should be raised and where they should come from – including strict regulations with breeding lineages, proper documentation, and careful housing and diet.  Some people question if we even should start raising animals for this alternative type of human consumption.  And other institutions may deem funding xenotransplantation as too expensive, especially with other up-and-coming technologies like using a recipient’s healthy cells to regrow his or her own organs in a petri dish.

One of the more complicated issues that make larger institutions hesitant towards xenotransplantation is trying to figure out who is liable if an xenotransplantation recipient rejects the organ or suffers worse consequences.  Would it be the pig the organ came from?  Or the farm that raised the pig? Or perhaps the hospital that approved the procedure?  Or maybe it could be an issue with the patients own body?

In an anticipatory fashion, it is important to be aware of this emergent technology and the attendant concerns, because perhaps in a not-so-distant future we may be further blurring the gap between species!

Further Reading

More information on Dr. David Cooper and Dr. Burcin Ekser’s work on genetically engineering pigs. And the original article in The Lancet  (paywall).

The abstract of Kuwaki, Tseng et al article on transplanting hearts from gene-knockout pigs into baboons.  And their follow up article (abstract only) about the baboon’s survival approaching 6 months after operation.

by Tarryn Corlett-Boden

One of the biggest challenges that The Sunflower Fund faces, is demystifying the myths and stigmas around becoming a bone marrow stem cell donor:

Many people believe it is a painful process to donate stem cells, involving a lumbar puncture or biopsy. This is simply not the case. Donating stem cells is much like a blood transfusion or donating platelets.

The PDF outlines the transplant process in a friendly pictorial series

The Sunflower Fund is made up of 18 staff members nationally and we are challenged when it comes to reaching outlying areas to educate all South Africans on the process. One of the methods that we used, was to create a PDF which educates the public on the criteria and the process while answering the most common questions that potential donors ask. This document is available on our website, emailed to the public and is also available at the South African National Blood Services, Western Province Blood Transfusion Services and PathCare centres across South Africa. It is important that we kept this document short and concise, while highlighting some of the most important facts. Adding images to the document was necessary as we believe people are very visual and can relate better to what it is that is being explained. Visually it also looks more exciting to read. Our donor information has helped us tremendously with our reach and educated thousands of willing donors.

An apheresis illustration from the PDF

The commitment of becoming a donor and staying on the South African Bone Marrow Registry until you are 60, is a critical part of our education and it is therefore imperative that a potential donor reads this information so that they are aware of the process and just how big the commitment is. We are recruiting bone marrow stem cell donors, to save the lives of patients diagnosed with life threatening blood disorders like leukaemia. When a match has been found, a patient is prepped for a bone marrow transplant. There is a point of no return for a patient, and should a matching donor decide to change their mind, this could have devastating results which is why the education and awareness is crucial and this is just one of the many methods we use.

Keep in touch with your donors and supporters by setting up a Facebook and Twitter page. We find this works very well, especially for advertising upcoming events. Create posters and leaflets that you can drop off at companies and schools. While it is important to keep up with the times, i.e. blogging and social media platforms, the old school methods of communication are still proving to be successful. Keep looking for new and exciting ways to create interest and awareness.

Links to the Sunflower Fund’s donor recruitment reference page PDFs:

English version

Afrikaans version

This year’s official Laugh for Lives postcard

Tomorrow is the 6th Annual Laugh for Lives (LFL), one of the biggest fundraisers for the Asian American Donor Program (AADP). The lineup is as exciting as ever, with returning performer Kevin Shea, but also talent never before seen on the LFL stage, including Monrok and Jimmy Ouyang. In fact, this year even deviates from the stand-up comedy  with a dynamic show from Maze Magic.

While TransplantInformers emphasizes many aspects of transplant donor outreach and education, one of the most accessible ways that this has been achieved on a larger scale is through entertainment. LFL exemplifies this and represents one of the most visible and longstanding of AADP’s fund/awareness-raising events.

For a wonderful retrospective of the event as well as a behind-the-scenes peek at how the event is planned, below you will find a refresher of TransplantInformers posts looking at some of the best outreach materials and the background of the Laugh for Lives benefit. We did this in hope that other organizations looking for ways to appeal to the public could find some new ideas in our wealth of archival material as well our staff guide from Ruby Law for putting together a successful benefit while incorporating educational aspects.

Laugh for Lives 2011

Laugh for Lives 2010

Laugh for Lives 2008-2009

After enjoying that blast from the past, launch into the future and get yourself a ticket to Laugh for Lives 2013!!!

Intern Ellyse always makes a good point

August 4, 2012

On Saturday I was at the Santa Clara County Fair. For the first time, I did a drive completely on my own. There were no other recruiters or volunteers. It was a bit tricky since I had to make a few trips to and from the car. Thankfully the other vendors were very understanding and were willing to help. The fair was very slow because the drive was in the morning to early afternoon and people were slowly trickling in during the later part of the afternoon. Since I was in a vendor area, people came to view what was being sold, so I had to reach out to a lot of people from my booth. Most people were not familiar with marrow or stem cell donation, so much of my time was taken explaining the procedures and the purpose of donating. A majority of the time people wanted something free from the table, so I had them take a flyer.

On the bright side, I got to talk to a lot of people and correctly inform them. I also got a few people interested in volunteering with our program or setting up drives because they had a family member or close relative who needed a marrow donation. By the end, I had only single digits of registered individuals with very few flyers and candy to give out. Not one of the most successful drives in terms of numbers, but it was definitely an experience that I can say I did on my own.

San Jose Farmer’s Market, Volunteer Party, and Piedmont House Raffle

Things have been getting really busy here lately. We have a lot more patients with very proactive families. This leads to a lot more drives, which means a lot more planning and coordinating.

This weekend was the AADP Volunteer Party. It was the first time we had an appreciation party for the volunteers while I’ve been an intern and it was great seeing some familiar faces. It was at City Beach in Fremont and I was introduced to bocce ball. I have to say, I’m a pro now! I also got to see some of the former interns and AADP has a great intern legacy that I hope that I’ve contributed to!

Right after the party, I went to help the Executive Director Carol sell raffle tickets at a house showing event. It took place in a fancy neighborhood in Piedmont. The house made me think of a bed and breakfast in Napa, and I expected to walk out the door into a winery. The catering was fabulous and I ended up networking with a lot of bay area residents who were passionate about the cause. I think everyone left pretty happy and relaxed after this event.

The very next morning I helped Thi, an AADP outreach coordinator, with a farmers’ market drive in San Jose. Our expectations were not too high because most people in the morning were focused on getting their fresh produce. However, in the later afternoon people began to warm up to the idea of marrow donation. I think the best part was that we connected a lot with the vendors at the market who were sympathetic to our cause. I think a lot of the vendors hoped to see us every week thereafter because they wanted us to be a regular part of their farmers’ market. It was a nice way to end the weekend.

Fairfield Tomato Festival

This would have been my last week at AADP, but I extended my internship to the end of October. So my mid-internship test was the Fairfield Tomato Festival.

This festival would be a big drive for me because a patient’s family would be there. A bunch of the nurses that were helping the patient would be present too. Not to mention they had been publicizing these festival drive dates heavily by telling as many media sources as possible and had asked most of their Kaiser coworkers to come out this weekend to register. They estimated that the turnout would be approximately 60 people.

Since I was put in charge of this drive I had to arrive very early to check in and set up. Most of the staff and other vendors were very friendly. There was an issue about other vendors taking preassigned spaces, but luckily most vendors were willing to share some space.

It was a very hot weekend and the Fairfield winds did not make it easy to keep our tent up. I must have tied everything down with packing tape or plastic zip ties. Thankfully the nurses and the patient’s family were very proactive at passing out flyers and getting the word out. It seems they were driven to work hard because they had a personal connection and were extremely passionate about helping the patient.

The first day we had a decent amount of traffic. The battle was mostly telling people what our cause was and just informing them of what was going on. The second day was another story. We had a bunch of nurses and their co-workers and family members generating a lot of excitement and commotion at our booth by shouting out “Become a stem cell donor! Help save Kyle’s life!” They basically took up both sides of the walkway, which got the attention of at least 90% of the passers-by. Since many people came to register, it attracted even more people to come over! We ran out of clipboards and places to sit so rapidly that we had to borrow seats of neighboring vendors!

I could really tell by the end of the second drive that the nurses and family members had a feeling of exhilaration and hope. I am so happy we did well for both the patient and for AADP. I think I passed my test.

Giving the Gift of Life (GGOL) is a unique programme cultivating organ, blood and bone marrow donor youth ambassadors through job skills training. It was created by the UK’s African Caribbean Leukamia Trust (ACLT). One of their participants from the programme gives us the inside scoop on his training experience.

‘Spread the word about organ donation?’ When I first started the programme, my perception of the whole scenario was similar to every other young person who had participated in the scheme; one of scepticism.  The questions that pervaded many of our minds were ‘What am I going to get out of this?’ and ‘is this a waste of my time?’

The initial stage of the programme included team-building activities, which at the outset seemed too much to demand of this random group of young people from South London.  But the leaders of the training programme insisted that these activities were important for our personal development and would improve our confidence and other soft skills. One of the activities involved shouting out our own names one by one while imitating or ‘remixing’ an action performed by a leader. Admittedly, this particular activity wasn’t my favourite, but it conveyed the idea that you can be yourself, without having to fear embarrassment or scrutiny. By the end of the first day we had to give a one-minute speech to camera. These activities were designed to get us out of our comfort zones; undoubtedly they achieved that aim. Now as trained Ambassadors, we’ll be able to effectively respond to a potential organ donor who may be taken out of out of his or her comfort zone. Our own inhibitions sometimes don’t allow us to accept a reality so distant from what we have usually experienced in our lives.

The training gave us clarity on organ donation where myths and fears cast a shadow. One example was the ‘mis’belief that if you sign up to be an organ donor, somehow your life is devalued and your organs are taken prematurely or even immediately! Clearly this isn’t the case. Hearing that it’s only once you have entered that perpetual resting place that one’s bodily organs are utilised to perpetuate life gives reassurance. The Ambassadors, with training and guidance can make all the difference by providing clarity, changing mind sets and getting people to act.

One GGOL Ambassador who also suffers from leukaemia and is the same age as me, spoke of one of his experiences with the illness. He had a friend who he met in hospital who also suffered from a blood cancer. Unbeknown to him his friend was given two days to live. As predicted on the second day his friend tragically lost his life. He was left feeling numb and didn’t get a chance to say goodbye. Upon hearing this story, the sense of urgency became very apparent to me. Before, I thought of disease and illness as something that didn’t affect my life but the truth of the matter is that anyone is susceptible.

After the training week the GGOL Ambassadors began work on a film to connect with the wider community on organ donation and the health issues that face us on a daily basis. In the film, a number of key speakers and representatives of the cause were interviewed. ACLT co-founders Orin Lewis OBE and Beverley De-Gale OBE, spoke fervently about giving and receiving and being able to benefit greatly from organisations such as the ACLT. Snakeyman, a well-known UK Rap Artist, also added that we ‘need to become leaders and lead by example’. George the Poet – a young critically acclaimed spoken word artist wrote and performed ‘Am I my Brother’s Keeper’, which punctuated the end of our film with a poignant call to action: “You’d buy something expensive for an arm and a leg, so why not give something more meaningful?’ So True.

With the training and guidance we received, Ambassadors can make all the difference in changing mind sets and getting people to act. We are making a difference by visiting other young people in universities, colleges and events across London, interacting with young people on a level that inspires a change of perspective about not only donation but also the cohesion of our own communities and what it is we can do for ourselves and each other without external assistance or intervention.

I have greatly benefited from this programme. As a volunteer, I learned to research effectively, organise my thoughts creatively and give structure to a presentation. This is a really important aspect of our roles as GGOL Ambassadors for the ACLT because many people are unaware of the endemic that faces our community. We have been equipped with the tools to convey the fact that life-threatening illnesses such as leukaemia and the need for organs can both affect anyone, young or old, Black or White. To learn that unfortunately you have a significantly reduced chance of finding a suitable unrelated donor if you’re Black or Asian due to the small proportion of people from these communities who have elected to get registered on the bone marrow and organ donor register cuts to the core. Coming into the project I felt strongly that it should not be left to members of the public to provide the major proportion of contributions to charities that actually help to save lives. I think the government should support more joint initiatives and provide more grassroots support for this cause as it is such an important issue that doesn’t get enough attention. The new National Black Asian and minority ethnic Transplant Alliance certainly is a leap in the right direction.It should not be left to members of the public supply a major proportion of contributions to charities that actually help to save lives.

The whole process has been an inspiration to me. Experiences that will last a lifetime were shared and passed on to us just like the Olympic Torch. They aroused our passion, and compassion for humanity was roused. The bonds of friendship were tightened, and a sense of purpose was established. The young Daniel De -Gale and the many others who have suffered the same fate but passed on a legacy to inspire a generation will live on in our memories and our actions. Their early departures will not have been in vain because our duty as conscientious members of the community has been awakened. So, as a Giving the Gift of Life Ambassador, I implore you to take progressive action. What are you waiting for? Join the ACLT’s Heroes Most-Wanted lists and get registered.

Intern Ellyse with drive volunteers

June 23-July 1

I’m entering my third week as an intern and things are happening so quickly! My first drive was a celebration in a Guamanian community. We were the only booth there and I expected little interest in our work. Surprisingly we had many genuinely interested individuals. This was likely due to the announcements during the festival, especially from our patient Joey and his family. Once Joey explained how he was in need of a donor with a similar ethnic background, people began to ask about our cause, showing empathy for a fellow Guamanian. It was a story that struck home for many people. Their only concerns were about how their general health might be affected by becoming a donor.

In contrast, we held another drive in a corporate setting. It was a small health fair with many large organizations and a few local groups. The organizers of the fair set up a requirement for employees to visit booths to enter a raffle. This exposed a good number of people to information about bone marrow donation. It was my first time delivering an informational spiel on my own. Since it was in a professional setting, I was a little nervous and initially stumbled on my words a bit. Thanks to some coaching from my coworker James, I was eventually able to make a smoother delivery to employees. Perhaps many employees learned new or up-to-date and accurate information. I could tell many people had preconceived notions of marrow donation, mostly what they had heard or seen in the media. Providing information helped to clear up any apprehension or misconceptions that they might have had.

However, the requirement to visit our table brought many others who only wanted our signature to enter the raffle but were not receptive the information. It was frustrating knowing that they may not have internalized any of my presentation, but I still needed to try in case there was a chance I could expose them to the idea of becoming a donor. This event was more of an informational day than anything else.

Fast forward to Saturday night in the San Francisco. Hyphen magazine had their 10th anniversary celebration in a decked out warehouse. The magazine caters to young professionals in the Asian American community, so the event had a diverse crowd interested in different parts of local culture and community issues. The sound system was up loud, people were dressed to mingle, and the smell of free food was in the air. People circulated around the room to browse the booths and a few stopped by our table to chat with us about our program. Maybe it was the celebratory ambiance or the population that the magazine drew in, but people were generally very receptive to our cause. I was surprised that many were genuinely curious about the registration and donation process or were interested in how bone marrow donation affected the Asian American community. Though we did not have many people register, there was a decent amount of interest for a social event.

The next morning, my fourth drive was at Abundant Life Christian Fellowship Church in Mountain View. It was our first drive at the location and we had a few volunteers and a patient come out to help. They had made announcements weeks in advance and had posters up throughout the church, so the community was prepared. My coworkers told me that it was our first drive in this community, but I was not prepared for what was about to happen: the after-mass rush! There must have been at least 10 to 15 at a time at our tables and a line that formed on the side. All our pens and clipboards were used and it was so crowded that I needed to direct traffic. I ended up giving swab demonstrations [to type registering donors] every 15 seconds. After two masses, my throat got a bit dry from all the talking (and the night before I was nearly yelling over the music). We had nearly 90 people register, which was the most I have ever seen at a drive. It was thrilling to see so many people register and/or support the drive. Even the patient, Joi, was excited about the outcome of the drive. My only wish was that the crowd was more organized. Posters for each area would have been helpful, perhaps with some arrows pointing people in the right direction. Next time, I will plan to bring more supplies and put up signs to help with crowd control.

After only one week of drives, I have seen a huge variety of settings and communities. I can’t wait for the next few events!

Ellyse Look shares her journey as an AADP intern with us in a series of thoughtful and detailed reflections. It’s a revealing window into the everyday ups and downs and the minutiae of donor recruitment. Her diary is also testament to a truly hands-on experience, and  a great example of how AADP empowers their interns with real responsibility and a space to express their views. It’s the new generation’s turn to add their voice to the conversation.

Click to view slideshow.

July 8

This Sunday we did a drive during the Tzu Chi Medical Outreach Summer Health Fair. It was pretty neat how they divided rooms into different areas: a waiting room, a seminar room, a clinic room, and a dental room. The staff was extremely supportive by setting up our table and directing patients to us. The majority of patients were among the older generation and primarily spoke Chinese. I definitely felt a disadvantage not knowing the language. Thankfully we had several bilingual volunteers helping. I learned that it is very important to understand the language in order to do outreach in these communities. However, another thing I noticed was that the younger generation (our target population) tended to be bilingual and a good amount of them were volunteers who already had some knowledge or background in health. This was a great advantage since most of the people who registered were in this group. In the end, the drive lasted for 7 hours and we averaged 2 registered per hour. Definitely another experience to add to my repertoire working as an intern.

July 14 & 15

This weekend was the San Jose Obon Festival. It also was the first time I ran a drive without an outreach coordinator! I had a few volunteers, but really it was a test if I could handle a drive on my own. The festival made it a very fun event, especially since we had a few young volunteers. At first some of the volunteers were pretty shy when asking people to register, but with more exposure, the volunteers became a lot more confident. The event coordinators were also very supportive of our cause. They let me make a few announcements (something I was extremely nervous about), which caused many people to come to our table. I think the main issue was that people did not know where we were located and what we were doing. Out of curiosity and word from announcements people eventually found us. By the end of each day, the group had a confident outlook on our progress and thought the “volunteering” turned into hanging out with friends while casually talking about marrow donation. I wish we had stayed longer and made announcements more frequently, but the main thing I took away from these drives was to stay determined and encourage others.

July 17

Today I did a drive with James [AADP Outreach Coordinator] at the Hayward Kaiser’s Farmers Market. It was a pretty small market, but it had a steady flow of locals, as well as hospital staff. Actually many staff members came straight to our area wanting to register because they knew of someone who needed a marrow transplant. It was a breath of fresh air to hear that they knew about our program, but they also knew all the health requirements and the reasons why they are important in marrow donation. The most unfortunate part was that a good amount of interested individuals did not meet our age and health requirements. Thankfully, they were extremely understanding. Better yet, some of them were so passionate that they took fliers with them back to their department in the hospital. We ended up getting a fair amount of people registered and I was glad to work in a hospital setting. It was great knowing that donors knew exactly what I was doing and why it was important. It made my job much smoother.

Part 2 of In Turn: Ellyse’s OutLook comes out next week!

A newly released study analyzes the impacts of leave and tax legislation on both living (organ and bone marrow) and deceased donation rates (organ only)(Lacetera et al 2012). You can access the full working paper describing the research findings. Additionally, NPR had some recent summary coverage of another free full text article that presents research examining the effect of tax deduction incentives (offsetting various costs of donation–transport, medical expenses, etc.) on organ donation rates (Venkataramani et al 2012).

Death and taxes? The relationship isn’t so clear in transplantation (Source: lucyfrench123, Flickr)

This blog, as many readers know, is supported by the Asian American Donor Program (AADP), an organization that was instrumental in the passage of the California’s most recent leave legislation, The Michelle Maykin Memorial Donation Protection Act. It added paid leave for nearly all bone marrow and organ donors to the already enacted leave legislation for state employees. We are therefore extremely interested in whether such legislation has made an impact.

Minimal impact does not mean abandonment, it means improvement

The Lacetera et al publication offers some positive results that such legislation has been modestly effective in promoting more bone marrow donations but there is not the same effect evident in organ donation. By specifically scrutinizing bone marrow donation for the first time, the research “supports an ‘incentive size’ explanation for the zero result on organs, namely that the incentives may be too low for more ‘costly’ donations but may work for less invasive procedures” (ibid, 4). Since there is a lower cost to the living bone marrow donor than an organ donor, the effectiveness of these incentives may vary. This is in keeping with existing literature on the positive effect on blood donation in a similar study.

And while both studies assert that legislated incentives do not show a statistically significant positive effect on organ donation donation rates, this is a hardly a reason to dismiss these kinds of initiatives. Rather, it is a compelling reason to improve their formulation and implementation. Even with no significant increase in number of donors/transplants, the data used nor its analysis measures other externalities which produce better tracking and treatment of donors, aside from the quality of the organ supply using post-transplant survival rates. This brings up the issue of whether every incentive or removal of disincentive has to necessarily increase the donor pool in order to be worthwhile. In fact, Venkataramani et al makes this point in their article’s discussion of other possible benefits of the legislation like donor quality of life that their study does not explore further. Dr. Venkataramani also concludes more accessibly in his blog post about his research:

First off, tax deductions don’t put that much money back in your pocket. For an upper middle class family of four, the value of a deduction amounts to $500-$900. Nothing to sneer at, but still below the estimated (opportunity) cost of making a donation. We argue that tax credits (which have a higher cash value) or grants may work better. Second, in doing the research we ended up talking to organ donation activists in many states, many of whom had no idea these policies were in place! It’s possible that a lack of awareness led to our null finding, as well. Finally, while we don’t elaborate on this in the paper, our Figure 1 shows that states that passed these laws experienced increasing donation rates relative to the other set of states prior to the passage of the laws. So it’s possible that states that were progressive enough to pass tax deductions were already doing other things to bump up donation rates.

Finally, while tax deductions may not lead to new donors, they may be helping people who would donate anyway.

While at a glance the headlines may imply the donation rate is the metric we should always focus on, the existing donor pool also deserves better monitoring and provisions to protect them under the law and in policy. Although both articles’ central concern is the positive effect on the number of donors, they do entertain the possible collateral social benefits that such legislative acts may also produce. But the analysis stops short of suggesting more strongly how the dissemination of these dis/incentives will be shared effectively in a population. The authors do point this out as a possible confounding factor in determining significance, but I would call for these issues to be examined more deeply. It would also be useful to make comparison of how effective different education measures have been in introducing the new incentivizing legislation. Lacetera et al also suggest that more widely educating donation advocates and the public at large that would work well given their results:

Works Cited

Venkataramani, A., Martin, E., Vijayan, A., and Wellen, J. (2012) “The Impact of Tax Policies on Organ Donations in the United States”  American Journal of Transplantation 12 (8): 2133-2140

As the press release states:

The charity has already reached thousands of teens through its education project Register and Be a Lifesaver (R&Be), which was launched in March 2009, following a campaign by Nottinghamshire journalist Adrian Sudbury, who had been diagnosed with leukaemia three years before.

Since then, R&Be volunteers have taught nearly 64,000 students the facts about blood, organ and bone marrow donation, through 1,110 presentations given in 376 schools across the country. As a result, nearly 5,500 young people have signed up to give blood, while nearly 1,500 have joined the organ donor register.

I am particularly interested in how effective this proves as far as actual donation rates, as well as whether these education programs or earlier registration result in better donor retention as well. Not only is Anthony Nolan lowering the age to register, but they have capped the age limit to focus on the key demographic:

You now have to be 16–30 to join the Anthony Nolan register whereas previously, you had to be aged between 18 and 40. There are over 455,000 people on the Anthony Nolan register, but men and women under 30 account for just 23% of the register.

Whether such change will be adopted in other countries is still up in the air. The efficacy of both the age shifts and outreach programs remain to be seen. But you can bet that TransplantInformers will keep following these developments.

Bonus: Press play for an older generation’s tune, still inspiring this “young” editor’s headlines. Though according to Anthony Nolan’s new guidelines I am getting scarily close to over the hill…

Finding the perfect match is no game (Source: therichbrooks, Flickr)

Profiling

Using various activities, interests and hints taken from the egg provider’s application forms, the fertility clinics create a profile for the egg provider. Specifically created to be as appealing and as marketable as possible, the providers’ profiles feature numerous pictures (some are professional head shots paid for by the fertility clinic), including during infancy and childhood. An egg donor I interviewed gives insight to the anxieties egg donors can feel when viewing their donor profiles.

I only looked at it once because it was kind of weird. I sent in a picture, a head picture that I knew was going to be the profile picture, and it just said my age and kind of weird interests that they gleaned from the applications. It was very strange. Like I remember it said that I played piano currently but I was like, yeah I played piano for ten years but I haven’t in the past two, you know? I mean I played for a long time but I wasn’t very good at the piano.

The donor profiles are then placed in the clinic’s own catalog in online and/or print media. For most prospective parents and egg donors the donor profile is the closest the two parties will ever come to meeting each other.  Only on very rare occasions do egg donors and prospective parents ever meet.  This is in distinct contrast to to the relationship building that prospective parents and surrogate mothers create. Due to this highly separated relationship, the clinics have to make an egg provider’s profile as marketable and eye-catching as possible. There is no other avenue to capture a prospective parent’s interest. If a prospective family decides upon an egg donor, the prospective family has to contact the fertility clinic and express interest in working with that specific egg donor. In this case, one can literally purchase a body (and the subsequent genetic material) from a catalog – not too dramatically different from ordering clothing.

Natural Selection?

There are some instances in which prospective parents do not know which egg provider to select or cannot decide between a few providers.  In these cases, the opinion of a clinic’s doctor becomes very influential–ultimately life-changing.  Fertility clinician doctors, nurses and employees can help decide which egg provider the potential family will choose by playing up the egg provider’s qualities, or by using pressure, even fear or anxiety (Almeling, 2007). Commercial motives and biases often underpin clinical advisement. Fertility clinics realize the potential family wants a pregnancy as quickly as possible, and a happy paying client equals a thriving business. If accentuating an egg provider’s specific qualities does not prove an effective deciding factor, some clinics will play off a prospective family’s fear or anxiety to pressure them to choose an egg provider. They induce a sense of urgency, emphasizing the need to make a swift decision in the competition to obtain a desirable egg provider. In turn, prospective families are more likely to choose that provider.  According to OvaCorp’s donor manager, “99.9 percent of the time [recipients] will go with [a donor], especially if they know someone else is waiting” (ibid).

This quotation shows the darker side of how fertility clinicians can sell their egg donors. The egg donors are still being treated and sold as objects, but their exclusivity and availability (or scarcity) are emphasized to make her seem more desirable. Similarly with the recruitment of egg providers, the matching of prospective family to potential egg donor is also wrought with commodification. Treating and advertising egg donors as products instead of complete human people affects the donor’s sense of individuality. Egg providers have little to no control over the egg providing process and rely upon the pre-established rules of the fertility clinic.  These fertility technologies are relatively recent and expanding at a high rate. The federal government has not yet created a distinct set of rules on the treatment of egg donors, surrogate mothers and other reproductive providers. Since the fertility industry is relatively unregulated, (e.g., the in-vitro fertilization procedure is still considered an experimental)  fertility clinics have chosen to heavily focus on their profits, letting the main structures of capitalism and consumerism drive guide their development.

I am not saying that fertility clinics should completely disregard their profits, however, the treatment of egg providers needs to change. Perhaps it could be as simple a step as letting egg donors create their own donor profile – instead of having the fertility clinic decide what is most marketable. Or maybe egg donors and prospective families should be encouraged to meet each other face to face, instead of relying on a few pictures and a donor profile. While these options may have their own bioethical brambles, these measures at least shift the emphasis from commdification to the humanity of donors.

References

Almeling, R. (2007). Selling genes, selling gender: Egg agencies, sperm banks, and the medical market in genetic material.American Sociological Review         72(3), 319-340.