Where's the Line?

Photo Credit: Fotos Gov/Ba

A study conducted in 2008 and 2009 showed that many scientists in the research community were fuzzy on the relationship between citizens’ rights and research to help the public. While some might say this uncertainty is acceptable given the fact that states have discrepancies between their newborn screening processes, we do not want to leave the health and constitutional rights of our children of people who aren’t really sure where to draw the line. The purpose of the study was to evaluate the views of newborn screening advisory committees on the current process and proposed reforms. The study identified problem areas with the current NBS process.

The study began by assembling a team of committees in charge of monitoring the newborn screening process in their states and advising their state legislators. The committees were taken from four states in the Mountain States region of the country (Arizona, Colorado, Montana, New Mexico, Nevada, Texas, Utah, and Wyoming), but the individual states were kept anonymous. The group met for one to two hours four times between November 2008 and June 2009. The groups were composed of lab coordinators, geneticists, pediatricians, community directors, and newborn screening staff. The groups were asked to give their opinions of the storage of dried blood spots (DBSs), the role of parents in the screening process, and the role of advisory committees in the process of newborn screening. Their responses were recorded and analyzed.

The study brought up several concerns that committees had with the process of newborn screening. It was decided that parents need to be more informed about the screening. The current process of educating parents usually consists of a stack of pamphlets that never get read. One participant was quoted saying, “People don't even know that newborn screening happens, and I know after having children, when you get stacks [of pamphlets] this high before you walk out the door, nobody reads it, so there's got to be a different mechanism.” The results indicated that parent education is one of the areas that needs to be reformed in the newborn screening process. Many participants were concerned about where it would leave them if parents were to receive more participation in the screening process. Several participants expressed concern with giving parents the option to deny researchers the right to their child’s DNA. They argued that if parents were more informed about the secondary research done afterwards, they may not want their child to even be screened at all. This would leave many children untested for many dangerous and preventable diseases.

Some, but not all, participants expressed concerns with the secondary use of the samples. One participant said, “I think it depends in part on the type of research that you're doing," and "I can see using the samples for sort of public health, seeing as they're part of the public health system already.” This brings up the issue of the intentions of research, which can become murky very quickly. If the research is for the greater good, is the current process of newborn screening a means to an end that should be overlooked because of its contribution to the future of science? Another participant argues that only the necessary tests should be performed on the samples without consent, regardless of the intent or goals of the research. This participant said, “And there's also the [question], ‘Why do you have me run screening; is it to do research, or was it because you wanted to screen for whatever disorder a child might have and help that child in that family?’” This participant has reservations about conducting any secondary research, taking into account the families of newborns being tested.

Another major issue that came out of this research was the ownership of the samples. Participants were unclear about whether the state, the health department, or patients had rights to the samples. Several participants felt that the samples belonged to the state because they were the ones regulating the screening. Others felt that the health department owned the samples, partly because they could properly organize and regulate the samples. Still other participants felt that the samples belonged to the families of the participants, citing the precedent that medical records can only be released to family.

Obviously, even those involved directly in the field and in charge of making life-changing decisions for newborns are confused about where the line is concerning newborn screening. Some areas, such as the education of parents, can be cleared up easier than others, such as the ownership of the samples, which might require legislation.


Works Cited

Title: Concerns of Newborn Blood Screening Advisory Committee Members Regarding Storage and Use of Residual Newborn Screening Blood Spots

Erin W. Rothwell, PhD, Rebecca A. Anderson, RN, BS, Matthew J. Burbank, PhD, Aaron J. Goldenberg, PhD, MPH, Michelle Huckaby Lewis, MD, JD, Louisa A. Stark, PhD, Bob Wong, PhD, and Jeffrey R. Botkin, MD, MPH

Long time no see

                           (Photo by Wikipedia.com)

 

After fifty years of hiding, the Mediterranean monk seal has finally decided to say hi. Last sighted in 1958, the monk seal seemed to have disappeared off the face of the earth until reports around the southern Israeli coastline started to crop up in late 2009 of their reemergence.

The first positive identification recorded happened in early 2010 when a photograph was taken of a female monk seal snoozing in a small sea-side alcove. Since then, the Israel Mammal Research & Assistance Center (IMMRAC) has received 45 visual reports, including video and pictures, of monk seal sightings. The evidence presented suggests that at least two monk seals are frequenting the Israeli coast which could possibly lead to the nullification of the monk seals local extinction status.

The Mediterranean monk seal is currently thought to be locally extinct from Israel. If the evidence presented is proven to not be a fluke, then it can be inferred that Mediterranean monk seals are trying to expand. This is a significant distance since their closest known colonies are located in northern Cyprus and Turkey.

Besides distance, the Mediterranean monk seal will face other challenges in colonizing the Israeli coastline. The coastal reserve by law currently protects only 16 km and there are no isolated beaches and caves free of human disruption. If the monk seal is to stand a chance in repopulating the Israeli coastline, conservation efforts need to be made a priority.

Works Cited

Scheinin, Aviad P.; Goffman, Ozz; Elasar, Mia; Perelberg, Amir; Kerem, Dan H. “Mediterranean Monk Seal (Monachus monachus) Resighted Along the Israeli Coastline After More than Half a Century.” Aquatic Mammals. Sep2011, Vol. 37 Issue 3, p241-242, 2p. 7 Jan. 2012. Web.

Photo: http://en.wikipedia.org/wiki/Mediterranean_monk_seal

Every Season is Flu Season

Throughout history, there have been recognizable patterns of the emergence of new diseases, especially influenzas. In just the last few years, the avian flu and the H1N1 “swine” flu struck fear into millions as a seemingly endless toll of victims became infected. In order to hinder the reappearance of these vicious patterns that hold a plethora of pandemics, some scientist believe that the surveillance of these flus is essential for prevention and protection. The pros to the research are made apparent in the Nature Online article “Open the Debate on Flu Research”. However, this is a polarizing issue for the opposition feels that the study of said diseases could lead to an accidental release to the public as stated in the Nature Online article “Caution Urged for Mutant Flu Work”. In order to gain knowledge of these diseases and how they are transmitted, I feel that the study of foreign influenzas is necessary.

According to Anthony Fauci, director of the US National Institute of Allergy and Infectious diseases, states that the debate over the issue is necessary. However, it is impossible to predict the dangers in the mutation of the diseases studied, until they are studied. “That is a problem, but it doesn't necessarily negate the potential importance of such knowledge, should we get the ability, perhaps through specialized centres, that could do much more extensive sequencing of sample viruses from outbreak areas.”

The opposition is not convinced of the potential of a public benefit from the testing and manipulations of mutant flus. “More than a dozen flu experts contacted by Nature say they believe that the work opens up important vistas in basic research, and that it sends a valuable warning about the potential for the virus to spark a human pandemic. But they caution that virus surveillance systems are ill-equipped to detect such mutations arising in flu viruses. As such, work on the viruses is unlikely to offer significant, immediate public-health benefits, they say.”

The stark views concerning this issue, brought to light by these articles, make it difficult to predict the reaped benefits of the surveillance of mutant disease and the potential dangers of public exposure. However, I feel that Anthony Fauci’s argument in favor of the research to decrease the risk of pandemics in the future is quite potent and difficult to dispute.

Works Cited

http://www.nature.com/news/caution-urged-for-mutant-flu-work-1.9882

http://www.nature.com/news/open-the-debate-on-flu-research-1.9896

A pesky thing called ethics

When it comes to ethics, people start thinking a little crazy. Add children to the mix and something is going to hit the fan. In the case of newborn screening, Nature Online published an article titled “There will be blood” that focuses on the dismissal of ethics when screening newborns by not obtaining informed consent from the parents. In another article, “Newborn screening program helps save twins' lives,” the article focuses on how newborn screening saved a set of twins’ lives, though informed consent might not have been obtained. While consent of intent would be nice to appease ruffled feathers, there shouldn’t be a question of ethics in newborn screening. New born screening saves children’s lives every year by catching diseases and disorders that could be fatal. Articles like “There will be blood,” stir up moral objection and undercut the important practice of newborn screening that articles like “Newborn screening program helps save twins' lives” emphasizes.

In “There will be blood,” the thesis reads as follows:

This is newborn screening in the United States, which identifies problematic conditions in some 3,400 infants each year. In many ways, it is public health care at its best. In others, it demonstrates the sometimes fraught relationship between the medical and research communities and the public. 

Nature Online pinpoints this “fraught” relationship by focusing on what’s done afterward to the blood samples obtained from pricking newborns’ heels:

The problem is not only that many parents miss the heel-prick test at the time, but also that they can be unaware of it altogether. That might be acceptable if the blood sample taken from their child was destroyed after screening, but it is not. In fact, some blood is retained (sometimes indefinitely), stripped of identifying information and used for quality assurance and unrelated biomedical research. Usually this is done without the parents giving their explicit informed consent.

Though the article at the end ends with a hope for reform to educate parents and to include informed consent, this article demeans the purpose of newborn screening and will probably warn parents off from the live saving practice. A peaceful transition to educate parents and to obtain consent will be thrown at the window if articles like these still continue to be published and most likely, the issue will end up in courts.

But for the people who can see pass the trap of ethics, they see newborn screening as a good thing. In the article “Newborn screening program helps save twins' lives (which also functions as the thesis),” the article focuses on a set of twins, Charlotte and Sophia Gonzales, who would have died their first week if were not for newborn screening. The twins screening revealed a rare metabolic disorder, methylmalonic academia, which is fatal when not caught early. The twins’ parents, Megan and Ricky Gonzales, do not recall signing a consent form, but do not feel any injustices or violations of ethics occurred. All they remember is that the screening saved their children’s lives.

The article also comments on the practice of keeping the blood spots after screening. ‘"What most people don't know and probably don't appreciate is that beyond actually screening your child to learn whether they have any inherited conditions that may be treated, their blood spot is kept in a bio bank indefinitely in California," said Jeremy Gru-ber, executive director of the Council for Responsible Genetics.’ Though he also comments on parents being more informed on the practice, he makes it clear the bank is not operated for malicious intent. Packard Children's Dr. Gregory Enns, the twin’s biochemical geneticist, also commented on the bank and is quoted saying, “The samples can provide important public health information but can't be accessed without consent.”

Although informed consent would be ideal, the article in Nature Online counteracts the movement of reform; it scares parents off screening. Newborn screening is not something that is to be feared, though. It is done to save children’s lives. If articles like “There will be blood” continue to penetrate the news, newborn screening may be stigmatized and parents will refuse the practice. Fortunately for Sophia and Charlotte, they were born before the controversy started getting heated, and are alive because of newborn screening. They same can’t be said for future newborns who might die due to negative views being projected on the live saving procedure.



Works Cited

Colliver, Victoria. “Newborn screening program helps save twins' lives.” San Francisco Chronicle. 20 Jan. 2012. Web. 29. Jan. 2012.

"There will be blood." Nature Online (2011). 14 July 2011. Web. 29 Jan. 2011.

What's a Whale Worth?

                                 

You’re on a boat. You’re in hot pursuit of another ship that is out on a whale hunting expedition. In the final moments standing between you and the enemy, a colossal wave pounds into your vessel, damaging it while ending your quest to save the whales. This is not a fictionalized passage from an adventure novel or from a commercial for Whale Wars. This is a real life example of what can happen in the seas where whales and whalers alike are hunted. But recently, a new system has been proposed to keep the war between whalers and conservationists as non-contact as possible.

In Nature’s article “Whales for Sale” the novel idea of setting tradable quotas in the whaling industry is reviewed (http://www.nature.com/nature/journal/v481/n7380/full/481114a.html). Quotas would be placed on the amount of whales that can be killed and could be met by whaling ships or purchased by anti-whaling groups. The author feels that the new scheme “would allow both sides to benefit with no loss of face” (Nature Online). The Whale and Dolphin Conservation Society (WDCS), however, feels that the quotas would serve to advance the whaling industry. The concept of tradable quotas has proven to be quite controversial ever since it first surfaced in 1982. These articles unintentionally fall into a dialogue about the pros and cons of the proposed system with each other, with the WDCS serving a counterpoint for every point given by Nature. After realizing and considering the risks associated with such a system and that the quotas could actually lead to more whales being killed to the point of extinction, it becomes clear that the quotas are not the perfect solution they claim to be.

“Whales for Sale” is petitioning for an allowance of quotas in order to keep both sides satisfied. The author details the ongoing battle “with campaigners maintaining their high-risk pursuit and their attempts to foul the propellers of the whaling ships with ropes, and the whalers responding with water cannon” (Nature Online). Sinking ships hardly seemed like the best way to deal with this conflict, so three scientists analyzed the average profits that whaling ships make off of different whale species in order to determine the appropriate prices for quotas. Smaller whales carry a quota of 13,000 U.S. dollars while larger whales can rake in 85,000 U.S. dollars.

Many conservation and whaling groups posted or published responses to the Nature article, among them was the Whale and Dolphin Conservation Society (http://www.wdcs.org/news.php?select=1145). The first claim made by the WDCS is that the quotas put in place would function as political rather than scientific. This means that financial interests and potential economic profit could drive the quotas up. The fish industry is one example of this because high prices for larger species of fish has yet to bring down quotas.

The genius behind the quotas is that not only do they attempt to limit how many whales countries can kill every year, but conservationists can also purchase a quota to save a whale. However, the moral concession that comes with the plan means that “committed anti-whaling campaigners would have to put aside moral objections” and “official approval for the heavily disputed notion that whales...are a resource to be exploited” (Nature Online). The proposed quotas would technically allow whalers or anti-whaling groups to purchase lives, but the scientists claim that they are not putting “a price on the head of a whale…of course” (Nature Online). The WDCS feels that whaling altogether is simply inhumane and should not be tolerated. Many conservation groups feel that by establishing quotas, policy-makers are sending the message that whaling is acceptable and should continue. The WDCS argues that whaling is not sustainable as whales live long lives and have slow reproduction rates and “that buying the whales' lives would help prop up a dying industry and other countries could be encouraged to start or resume commercial whaling to claim their share” (WDCS). “Countries such as China and South Korea have all indicated that they would start whaling if quotas were allocated” (WDCS). The potential economic profit of whaling stands to draw new countries to the business, which conservationists see as unacceptable and counterproductive.

The article by the WDCS was more convincing due to the methodical manner in which arguments were delivered. The concept of tradable quotas may seem perfectly fair at first, but it is necessary to consider the possible outcomes of such a system before committing to it entirely. Most would agree that the potential for quotas to be driven up or for more countries to join the whaling industry is too great to be ignored.


Works Cited

"Whales for sale." Nature. N.p., 11 Jan 2012. Web. 28 Jan. 2012. <http://www.nature.com/nature     /journal/v481/n7380/full/481114a.html>.

"Proposal For Quotas To Save Whales Rejected By WDCS." WDCS Whale and Dolphin Conservation Society International. N.p., 12 Jan 2012. Web. 28 Jan. 2012. <http://www.wdcs.org/news.php?select=1145>.

Necessary Reforms for Newborn Screening

There is an ongoing debate about the rights of parents in the process of newborn screening. Newborn screening tests for genetic disorders days after birth, often times without parents’ consent or even knowledge. The current system of newborn screening is completely unethical, and reforms of newborn screening procedures are desperately needed in order to ensure that the rights of parents and infants are properly protected.

Newborn screening identifies genetic diseases by pricking infants’ feet and placing blood samples on filter paper. This sample is then tested for a number of diseases that can be managed when detected early. This seems like a reasonable procedure. After all, who wouldn't want to protect their child from preventable suffering and disease? What happens to the sample after it is tested is the most questionable portion of the testing: the sample can be sent to research facilities and kept indefinitely for any kind of research.

The American College of Medical Genetics (ACMG) has affirmed the effectiveness of newborn screening in diagnosing disorders, stating that “it is estimated that thousands of babies' lives have been saved or have been spared from serious disease as a result of the expanded NBS” (esceiencenews.com). Obviously, eliminating newborn screening altogether in order to protect the rights of patients is not the proper solution. The ACMG did not say, however, anything about reforming current practices or regulations of newborn screening. This gives the strong impression that they see no need for reform nor do they intend to make any changes about their policies. While Nature’s “There Will Be Blood” does not dispute the usefulness of newborn screening, it does confront typical practices for administering the test and handling the samples.

“There Will Be Blood” highlights the fact that even when parents are aware of the fact that their child is being screened, which is not always the case, they usually have no knowledge about the possibility of their infant’s DNA being stored indefinitely for research. If parents are given the choice to have their child’s blood spots destroyed after being tested for disorders, they are often asked to make the decision on the spot and with little information about the process. Much of this ambiguity in the screening process comes from the fact that states get to conduct the process, resulting in a lack of uniformity and regulation.

The ACMG released a statement from their 2009 summit about newborn screening, affirming that “newborn screening blood spots are stored with rigorous control and respect for privacy and confidentiality to protect the public” (esciencenews.com). However, whether or not a patient’s name is linked to their sample is not the issue. The fact that the samples are kept at all without consent is the real problem.

In 2006, the ACMG “recommended that all newborns in the United States be uniformly screened for 29 conditions” (esciencenews.com). While this recognizes the need for uniformity among screening processes by requiring that all newborns be screened, it is hardly a solution because it proposes no regulation of hospitals. More accountability among the medical and research fields is necessary in order to protect the rights of patients. Three things must be done in order to bring the screening process where it needs to be: 1) educate parents about the screening process in advance, and 2) give parents a choice of what happens with their child’s blood spots 3) hold researchers and hospitals accountable for the samples of newborns’ DNA.

“There Will Be Blood” theorized that these reforms have not taken place yet because researchers are afraid of how it will affect their sample size. They fear many parents will not release their child’s blood spots if they are more informed about the screening process and given the choice to opt out. However, “There Will Be Blood” argues that parents would most likely consent if given the chance to make an informed choice. “To be unclear about how newborn blood is collected and used is the fastest route to turn the public against sampling of newborns for any purpose — including screening programs” (Nature). These reforms would give parents peace of mind about their child’s DNA being used for research, but also allow the medical community more freedom to research because they would no longer be working in secret. We cannot let the misuse of newborns’ DNA be added to the long list of injustices committed against the American people by our broken healthcare system. Without reforms, the current newborn screening process is completely unethical.


Works Cited

"There Will Be Blood." Nature Online. 475.139 (2011): n. page. Web. 3 Feb. 2012.

"American College of Medical Genetics Affirms Importance of Newborn Screening Dried Blood
Spots." e! Science News. N.p., 11 May 2011.

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