Even Gene Editors Need an Editor

During the international conference that went by the hashtag #GeneEditSummit, a message on Twitter thanked the Center for Genetics and Society for a clarification: “I know @C_G_S understands my views. But it came out sounding like the opposite.”

Funny how that happens. One might call it an off-target consequence.

Take the official statement that concluded the International Summit on Human Gene Editing in Washington, D.C. (aka #GeneEditSummit).  

You could read the statement in several ways, and that’s how it has been read. Science News reported that human gene editing was given “a green light. The Guardian agreed: “Summit rules out ban.” “No ban, no moratorium,” medical science reporter Lisa M. Krieger tweeted.

But if they’re correct, then explain the New York Times headine: “Scientists Seek a Moratorium on Editing of Human Genome.” The blogging stem-cell scientist Paul Knoepfler tweeted: “Geez. Nicholas Wade misses boat on #GeneEditSummit.” 

Perhaps the confusion is best explained by an exchange toward the end of the summit, when organizers were asked if their statement might be translated into clearer language more easily understood by the public. To which Dr. David Baltimore, principle organizer of the summit and former president of CalTech, said: “You mean it isn’t?”

See for yourself here. 

Baltimore deserves praise him for orchestrating an important three-day conversation that was truly international on a morally, culturally divisive issue — determining appropriate use of emergent technology capable of altering genes in a way that might cure diseases such as HIV, hepatitis-B and sickle cell anemia. Done equitably, few would argue against it. 

The technology also holds the potential to make a range of changes that could be passed on to future generations. This tends to freak people out — notably, those non-scientists whom Baltimore and his colleagues need to learn to communicate better with.

And yet the summit was a good start on the path to trust and social buy-in for such scientific research, and future public engagement planned by the National Academies of Science holds promise.

One of the first criticisms of the summit was how long it took to get a woman to the podium. One of the last concerned the marginal role of religion. That might be understandable in the context of the largely secular world of science, but to have any hope of broad public support on questions that are at least as much about values as science, that can’t persist.

It wasn’t until the final panel on the second day of the summit that religious values were broached. Speaking of his country, a Nigerian hematologist and panelist said: “We are a religious people. We like to pray.” The hall was almost churchlike in response. But one thing the tool known as CRISPR will never successfully edit out of the dialogue is religious values, and when it tries, the off-target cost could be social buy-in. 

Bringing religion into this dialogue will never be easy. Which one? Will it have to pass an evolution litmus test? Swear an oath to embryonic research? Complicated, indeed.

Good, though, that the dialogue has begun.

Getting a Handle on CRISPR/Cas9 (Part 2)

Takeaways from Day 2 of the International Summit on Human Gene Editing. The challenge: Not devoting all of them to legal scholar and doctor of irony Barbara Evans.

(Bios here: http://nationalacademies.org/gene-editing/Gene-Edit-Summit/index.htm)

1. Barbara Evans’ scenario: Couple meets for a date. One says to other: BTW, I’ve had my genes edited. #FutureImplications
2. Janet Rossant, Toronto Hospital for Sick Children: “It’s absolutely our responsibility” to engender public buy-in and trust.
3. In France, UK, US, no plan to launch public debate on gene editing. “It might be a good idea.” (Jennifer Merchant)
4. Listening & wondering: Is germ-line editing a distraction?  The breakthroughs and greatest uses will come with  somatic cells, which are much less ethically suspect. 
5. Yes! Molecular biologist Thomas Reiss makes a case for accessible language (and uses it himself). #HealthLiteracy
6. “What is needed is a very authentic form of public engagement,” requiring that“science learns to communicate with public.” (Keymanthri Moodley, S. Africa) 
7. One concern in a “wild wild west” of gene editing: medical tourism.
8. One concern if there’s a moratorium: “It will only limit the legitimate science” (Ephrat Levy-Lahad, Israel)
9. International regulation would discourage medical tourism, but hard to respect social, cultural and moral/ethical differences among countries.
10. An ethics question: Does principle of double effect have anything to say about the problem of off-target modifications?
11. Public health disease burden in settings such as Sub Saharan Africa is high priority. Hepatitis B and HIV have treatments, not cures, possibly creating a moral imperative for somatic gene editing.
12. Context: In a 6 billion character, 1.1-million page Book of Genome, a single typo causes the disease. (Matthew Porteus)
13. @rocza points out, “a lot of the #GeneEditSummit debate is about values, not science. We need to NOT pretend otherwise.”
14. Can regulation catch up with the science? Would that be a good thing?
15. Barbara Evans again: “The science of regulation is more precarious than the science of gene editing,”
16. Day’s last panel a true international summit: Nigeria, Germany, France, Israel, S. Africa, Sweden, India. 
17. How to silence a room full of scientists: “We like to pray.” (Fola Esan, Nigeria)
18. Religion wasn’t mentioned until Day 2’s final panel (which then was cut short): “Nigerians are deeply religious people.” Nigeria also has high maternal & child mortality and high sickle cell. Again, moral imperative.

Getting a Handle on CRISPR/Cas9

One day into the International Summit on Human Gene Editing in Washington, D.C., I’m struck by how easy it is for a lay person (namely myself) to get lost in the science. That gulf in comprehension complicates the effort to earn public buy-in and trust for use of the new technology.

This summit has brought together policymakers, scientists and ethicists from China, the United Kingdom and the United States in a quite extraordinary attempt to understand and possibly assign limits to the use of emerging technologies that can be as morally troubling as they are scientifically promising. 

It was heartening to hear, early in Day 2, a call for scientists to take responsibility for helping the public understand both the profound benefits and considerable risks inherent in the new gene-editing technology.  (If “Aldous Huxley” and #BraveNewWorld are trending this week, this is why.)

The summit continues today and Thursday, and is available live via webcast.  

I’m especially looking forward to Thursday morning’s session titled “Interrogating Equity.”

What follows are a layman’s takeaways from Day 1, a webcast of which is available for viewing here: 

1. Predicting outcome in a Twitter word count: Yes to treating, curing humans. No to altering humanity.
2. When a child’s leukemia is effectively treated in a new way, there is broad public support. 
3. Questions: When is CRISPR/Cas9 safe to use? When is it therapeutically justified? (Answer unclear as yet)
4. To paraphrasing one presenter: Our capacity for manipulating is greater than our understanding.
5. With gene editing, the shadow of eugenics is unmistakable & maybe unshakable.
6. In that context, “That was then, this is now” is not a convincing argument.
7. It took 90 minutes to hear from the first woman (Alta Charo, U of Wisconsin).
8. The challenge of getting CRISPR/Cas9 to behave: “Off-target modifications” are at heart of concern. Translation: Beware of unintended consequences and collateral damage.
9. Favorite moment: Physicist Jonathan Weissman of UC San Francisco likening gene editing to volume control. Weissman’s dial goes to 11. #SpinalTap @ #GeneEditSummit
10. In helping the public understand, @pknoepfler’s blog is a good model: 

One last thought: This summit in itself is a good step on the path to social buy-in.

The Coming Changes to Informed Consent

You could fit the Golden Rule — Do unto others as you would them do unto you — into a single Tweet and have 96 characters to spare. #Clear&Concise.

The Common Rule, by contrast, runs into the hundreds of pages. #WordyFeds

But at the center of the Common Rule is informed consent, a process that is rarely clear or concise but can be summed up in a Tweetable phrase: Nothing about me without me.

The Common Rule is a set of federal regulations protecting human subjects in government-funded research. Much like the field of bioethics itself, the Common Rule came in response to research abuses, notably including the decades-long Tuskegee syphillis study, where curative penicillin was kept from impoverished African American subjects without their knowledge.  

A new Common Rule is being written and is expected in 2016. Central to this revision is the role of consent at a time when genomic information and vast stores of data and biospecimens (blood, tissue, etc.) hold tremendous potential for development of cures and treatments. But that history of abuse infuses the process with caution, especially as relates to changing consent.

An informative series of forums have been held around the country and are available for viewing on YouTube (one example).

A summary of what is known as the #NPRM (Notice of Proposed Rulemaking) is available here.

Comments are invited until December 7. See details below.

It is the sort of bureaucratic undertaking that makes many Americans’ eyes glaze over. And yet the impact of this policy will be felt for years — on scientific research, medical treatment and the care and trust of the public, especially its most vulnerable members. 

To comment, go to http://www.regulations.gov/#!home, search for docket number HHS-OPHS-2015-0008, and click “Comment Now.” Or, comment by mail to: Office for Human Research Protections (OHRP), 1101 Wootton Parkway, Suite 200, Rockville, MD 20852

Decision Making for Unknown & Vulnerable Patients: A Survey

Go straight to the survey, or read on.

The Community Ethics Committee (CEC) has become a valued resource for the ethics leadership of Massachusetts General Hospital, Boston Children’s and other institutions affiliated with Harvard Medical School.

Now you can provide a valuable voice to the CEC in its current study of an especially vulnerable patient population. These patients are known by various names -- unrepresented, unbefriended, adult orphans, etc. -- but the CEC refers to them as Unknown and Unrepresented Patients.

Due to dementia, brain trauma, substance abuse or other reasons, these patients at least temporarily cannot comprehend their medical situation or influence decisions. Further compounding the mystery, they have no one to speak for them, and there is no available documentation of their wishes.

Decisions that sometimes involve life-sustaining treatment can be left to overburdened courts, inadequately resourced public guardianship, or decision-making practices and biases unique to each physician, hospital or care facility. The result ranges from neglect to over-treatment, potentially harming both the patient and the moral values and integrity of doctors and nurses caring for them.

This patient population is growing commensurately with a doubling of the elder population  nationally by 2030. The conservative estimate is that 25,000 of these unknown humans die in American critical care wards annually. Most of these involve a decision to withhold or withdraw life-sustaining treatment.

How, and by whom, ought medical decisions be made for patients who cannot make their own and have no one who knows them well enough or cares enough to make it for them?

You can inform this important project by answering 10 questions in this survey. The time commitment is small, but the contribution is great.

The CEC is grateful for the work of Talia Burstein, a student at Emory College and a graduate of Brookline High School, for her thoughtful and diligent work in creating this survey.

Book Review: Robert Klitzman's "The Ethics Police?"

Robert Klitzman insisted on a question mark.

When “The Ethics Police” was in consideration as the attention-grabbing title for Klitzman’s probing and perceptive book about institutional review boards, his initial reaction may also have involved an exclamation point. But key to agreement was a question mark.

Klitzman, a psychiatrist and director of Columbia University’s masters program in bioethics, had no such concern with the subtitle, “The Struggle to Make Human Research Safe,” because that is precisely what his book is about. Making human research safe is indeed a struggle -- a profoundly difficult balancing of the public’s eagerness for cures and treatments with the scientific community’s eagerness to respond.

With $100 billion spent annually on biomedical research in the US, the money at stake is staggering and aggressively fought over, ethical shortcuts are tempting, patients themselves increasingly insist on leap-frogging the science, and the terrain is rife with conflicts of interests.

Klitzman’s interest in research and oversight is not purely professional. His father died at age 78 of a blood cancer after an experimental round of chemotherapy that Klitzman talked him into.

“The treatment had arguably made him suffer more, not less,” he writes. “I wondered whether my mother’s wish to let him die in peace had been right -- whether I had been biased, too ‘pro-science?’”

He wondered, too, whether his father’s doctor had been overly optimistic about the treatment. He took solace in the hope that his father’s experimental treatment contributed to the care of future patients.

Klitzman’s personal story is no less important to “The Ethics Police?” than his bioethics and medical credentials, his experience as a researcher or his interviews with IRB members. Indeed, the personal gives this book its power.

Klitzman’s role in his father’s consenting to treatment -- treatment that Klitzman’s mother opposed -- provides a view into the complexities of informed consent, and the importance of a physician knowing how much to explain so that consent is indeed “informed.” Easier said than done, to be sure.

How much of the decision reflected the father’s wishes, and how much was deference to the son? How ought the physician to have weighed this?

In such a story, informed consent can seem a fool’s errand, as the most important “facts” of risk versus benefit often are known only in retrospect, and yet the consent process has long been widely accepted as crucial to safety in research. For reasons of research integrity and transparency, it’s easy to see the value in requiring that the researcher explain risks and benefits to the patient/subject, and that both actually understand the difference between “patient” and “subject (or, participant).”

“Many of the achievements that have advanced biomedicine have also, by necessity, involved human subjects, posing myriad cultural, ethical, and legal questions,” according to Klitzman. “These trade-offs are so intricate that every year scandals erupt, unforeseen by those involved.”

For more than four decades, institutional review boards, or IRBs, have been responsible for overseeing human research and avoiding those scandals. They in a sense act as arbiters of the social contract: tasked with halting unethical research, approving valid research, and readily recognizing the difference. They also have a reputation among some researchers for slowing the advance of science. Thus, the nickname: ethics police.

Klitzman insists “The Ethics Police?” is not “an anti-IRB book” and credits IRBs with doing “extremely valuable work” as “mandated committees generally struggling to do their best to protect subjects.”

The great irony within the pages of “The Ethics Police?” is that many of these committees, established by Congress in 1974 to ensure research ethics and safety, are themselves subject to little or no scrutiny or oversight. There are now 4,000 IRBs in the US, many essentially playing by their own sets of rules, though all are subject to the federal research regulations known as “the Common Rule.” (A long-awaited revision to the Common Rule may be forthcoming later this summer.)

Klitzman doesn’t see IRBs as police, except in perhaps the exceptional cases -- those controversial occasions that shed more heat than light on the process.

And yet he has had the experience of having his own research mired in IRB quicksand, losing valuable time and opportunity to bureaucratic inefficiency. (In this, it is not hard to see aspects of the debate over 21st Century Cures Act and its intended reforms of the Food and Drug Administration’s processes of drug approval.)

Perhaps “Ethics Traffic Cops” would be the more apt title: keeping safe and ethical research flowing while directing more troubling traffic to an alternate route and avoiding gridlock.

But in no small way, public trust in health care, especially among the marginalized and most vulnerable, is dependent on IRBs to act as guardian at a time when the distinction between research and care is blurring. And yet few know who IRBs are or what they do, and many IRBs apparently like it that way.

Klitzman writes convincingly that this lack of transparency must change. He wants researchers to appreciate that “IRBs are not the enemy,” and more public education about the research and oversight process.

He also calls for greater transparency from IRBs, which can be varied in approach and secretive in practice. According to Klitzman, “Whatever criticisms IRBs provoke, reforms cannot be designed or implemented effectively without fuller comprehension of the perspective of the individuals serving on the boards.”

Also needed, he writes, are studies into “how frequently committees construe and apply regulations differently due to particular psychological and institutional factors, and whether and how educational or other interventions can reduce problematic IRB variations.”

The success Klitzman had interviewing IRB members only underscores the need for more such access.

“I think we need to explore far more the interpretations of ethics,” Klitzman writes. “Many philosophers and others have tended to see ethical principles as simply involving universals that are either present or absent in particular arguments.

“(The interviewees) illustrate how these principles get interpreted and applied in variable ways, molded by broader social, institutional, and psychological influences. This is not by any means to say that all interpretations are equally strong, valid, or well-reasoned: some interpretations are better than others.”

Clinical medicine increasingly turns to multidisciplinary teams for guidance in difficult areas of decision making and care. There is an important place in research for such teams, as well.

According to Klitzman, “We need models that are based not solely on science, law, or ethics, but are instead multidisciplinary, integrating the humanities with natural and social science. Much of research ethics is, and will always need to be, done by consensus, and negotiated over time by a complex array of researchers, ethicists, and others. We should strive to reach the best consensus we can. Much depends on this balance.”

The Ethics Police? The Struggle to Make Human Research Safe. Oxford University Press. Robert L. Klitzman, M.D., author.

 Also posted at paulcmclean.com

Student Perspectives on a World They'll Inherit

To date, Community Voices in Medical Ethics has done its most significant work through the Community Ethics Committee. The CEC has studied a number of difficult ethical questions, many of them related to decisions concerning care at the end of life, and given recommendations to the Harvard teaching hospitals through its ethics leadership.

These reports are meant to bring a community voice into the institutional dialogue at the hospitals. You can read these reports on this site under Publications of CEC.

A second aspect of the Community Voices work is in public engagement, and an example of that can be viewed under Transplant Ethics Outreach.

Transplant Ethics Outreach consists of two visual art pieces and a video produced by high school students of Julian Willard, a founding member of the CEC and a member of the Community Voices board. Julian teaches English and founded the Interdisciplinary Studies Department at The Rivers School, a small college preparatory day school in Weston, Massachusetts.

Julian has a bachelor’s degree from Oxford University and a Ph.D in philosophy from King's College London. More recently, he pursued his interests in the bioethics and interdisciplinary education as a Yale-Hastings Scholar in Bioethics (2013-14) and as a Future of Learning Fellow at Harvard’s Graduate School of Education (2014). 

The student videos reflect Julian’s interest in community outreach efforts that promote reflection and discussion of ethical issues associated with contemporary medicine. The outreach materials presented here are part of the student work for an ethics course at Rivers in which students are called upon to integrate the disciplines of biology, literature, and philosophy in order to respond effectively to key ethical questions.

So please have a look at these student perspectives on challenging issues in medical ethics. 

Julian’s passion for bioethics education is also on display in his research paper for Taylor & Francis Online, which proposes an interdisciplinary approach based on the CEC’s report on medical futility. Read Julian’s paper here and the CEC’s report here.

“For public engagement to be truly public we need to include young people as well as elders and everyone in between,” says Community Voices and CEC co-founder Carol Powers, “In fact, one could argue that those young people have the most at stake since they will be caregivers and policy makers and patients whose rights and responsibilities, values and health care will be shaped by decisions made today.”

No Capacity, No Family, No Voice

Jennifer Chevinsky, moderator of the weekly @BioethxChat on Twitter, recently recorded an insightful video message about a growing class of patients who haven't the capacity to understand their medical situation, or express their wishes for care, have nothing in writing regarding their wishes, and no family or close friends who can or will speak for them.

The Community Ethics Committee is completing a report on this patient class for the ethics leadership and teaching hospitals of Harvard Medical School. Chair Carol Powers and colleagues will present at a workshop devoted to the subject May 7-8 at the University of Arkansas for Medical Sciences.

See Chevinsky's video here.

Ethics, Ambiguity & "The Emperor"

Ethical decision-making is a balancing act. Sounds simple enough. But finding that balance is about as simple as getting the toxic cocktail right for a round of chemotherapy: Strong enough to do what’s needed, but not too toxic. Benefit and harm in every drop.

There was much to absorb in the first night of “Cancer: The Emperor of All Maladies,” even having read and reread Siddhartha Mukherjee’s remarkable “biography of cancer” that inspired the three-part PBS documentary.

The opening episode did many things right, but nothing captured for me the unyielding ambiguity of cancer care more than one parent’s description of the quest to cure childhood leukemia: “Unspeakably depressing and indescribably hopeful.”

Among the more than 15,000 sending tweets during the opening episode (#CancerFilm, @theNCI), one said she lasted 10 minutes before tuning out. She hopes to make it to 15 tonight, but no promises. Such is the ambiguity simply in choosing to watch while a family becomes a husband, a wife and their despair.

Even as I anticipate the second of three episodes, I’m still struggling with the tension between Sidney Farber’s firm and angrily defended stance against harming vulnerable children and research practices that clearly harmed sick children but in the process transformed childhood leukemia from merciless and fatal to merciless but survivable.

“I will not injure two children to save one,” the chemotherapy pioneer once said in a heated encounter with another pediatric oncologist.

Farber said this in the mid-1960s, when at the National Cancer Institute, Emil Freireich and Emil Frei were increasing survival of pediatric leukemia by experimenting with four toxic chemicals in combination. That was too many for Farber, who was as dedicated as anyone to treating and curing leukemia but saw harm as tipping the balance.

And yet, into the 1960s, no child survived leukemia. Today, nine out of 10 survive it, largely due to the evolving chemo cocktail.

The half-century that produced that astounding fact also led to the elevated place of informed consent in medicine and science. On Monday night, we watched parents absorb some promising news and then have to decide whether to follow the medical team’s advice and give their child over to a randomized trial. “The thought of your child’s treatment being up to a computer is hard to take.” Indeed.

Reality TV gets no more real than “Emperor of All Maladies.” I’ll be watching again tonight. Hopefully for the full two hours. But, as an oncologist might say, no promises.

Cross-posted at paulcmclean.com.

Also see Matthew Herper’s excellent piece for Forbes. 

Palliative Care's Highly Placed Supporter (Pope Francis)

In CEC studies of decision making in medical care at the end of a person’s life, two themes have emerged as most important: 

1. The communication skills of the care team, especially the attending physician (in particular, an ability to listen as well as explain).

2. Not waiting till the last minute to involve specialists in palliative care. (The CEC appreciates the care more than the name; we prefer to think of it as compassionate care.)

As CEC chair Carol Powers wrote in a November 2013 letter to the Massachusetts Department of Public Health: “The Committee has three primary concerns about the provision of information on palliative care and end-of-life treatment options. That information must be sensitive to cultural and religious perspectives; it must be in a form that assumes face-to-face conversations with a member of the patient’s health care team; and it must be provided in the context of continued and compassionate care.”

I thought of Carol’s letter, and her testimony to the DPH’s Public Health Council, while reading a new statement of support for palliative care from a powerful voice: Pope Francis. In a letter of strong endorsement to the Pontifical Academy of Life, the pope defined palliative care as “an expression of the properly human attitude of taking care of one another, especially of those who suffer.”

The full text as translated by Vatican Radio follows. A report concerning the letter can be heard here.

Dear brothers and sisters,

I cordially welcome you on the occasion of your general Assembly, called to reflect on the theme “Assisting the elderly and palliative care,” and I thank the President for his kind words. I am especially happy to greet Cardinal Sgreccia, who is a pioneer... Thank you! Palliative care is an expression of the properly human attitude of taking care of one another, especially of those who suffer. It bears witness that the human person is always precious, even if marked by age and sickness. The human person, in fact, in whatever circumstance, is a good in and of himself and for others, and is loved by God. For this reason, when life becomes very fragile and the end of earthly existence approaches, we feel the responsibility to assist and accompany the person in the best way.

The biblical commandment that requires us to honour our parents, understood broadly, reminds us of the honour we must show to all elderly people. God associates a double promise with this commandment: “that you may have a long life” (Ex 20:12) and, the other, “that you might prosper” (Dt 5:16). Faithfulness to the fourth commandment assures us not only of the gifts of the earth, but especially of the possibility of enjoying them. In fact, the wisdom that makes us recognize the value of the elderly person and that brings us to honour them, is the same wisdom that allows us to appreciate the numerous gifts that we receive every day from the providential hand of the Father, and to be happy. The precept reveals to us fundamental pedagogical relationship between parents and children, between the elderly and the young, with regard to the preservation and transmission of the teachings of religion and wisdom to future generations. To honour this teaching and those who pass it on is the source of life and blessing.

 On the contrary, the Bible reserves a severe warning for those who neglect or mistreat their parents (cf. Ex 21:17; Lv 20:9). The same judgement applies today when parents, having become older and less useful, are marginalized to the point of abandonment. And there are so many examples!

The Word of God is always living, and we see well how the commandment proves topical for contemporary society, where the logic of utility takes precedence over that of solidarity and gratitude, even within families. Let us hear, then, with docile hearts, the word of God that comes to us from the commandments – which, let us always remember, are not bonds that imprison us, but are words of life.

“To honour” today might well be translated as the duty to have extreme respect and to take care of those who, because of their physical or social condition, could be left to die, or “made to die.” All medicine has a special role within society as a witness of the honour that is due to elderly persons, and to every human being. Neither the medical evidence and efficiency, nor the rules of health care systems and economic profit, can be the only criteria governing the actions of doctors. A State cannot think of making a profit with medicine. On the contrary, there is no more important duty for a society than safeguarding the human person.

Your work in these days explores new areas for the application of palliative care. At first, they were a precious accompaniment for cancer patients, but now there are many different illnesses, often related to old age and characterized by a chronic and progressive deterioration, that can make use of this kind of assistance. The elderly, first of all, need the care of family members – whose affection cannot be replaced by more efficient structures or more competent and charitable healthcare workers. When this is not sufficient, or in the case of advanced or terminal illness, the elderly can be benefitted by truly human assistance, and receive adequate responses to their needs thanks to palliative care offered in such a way that it supplements and supports the care provided by family members. Palliative care has to objective of alleviating suffering in the last stages of illness and at the same time of assuring the patient of adequate human accompaniment (cf. Evang. Vitae, 65). It deals with the important support for the elderly, who, for reasons of age, often receive less attention from curative medicine, and are often abandoned. Abandonment is the most serious “illness” of the elderly, and also the greatest injustice they can suffer: those who helped us to grow must not be abandoned when they need our help, our love, and our tenderness.

I therefore welcome your scientific and culture efforts to ensure that palliative care can reach all those who need it. I encourage professionals and students to specialize in this type of assistance, which has no less value on account of the fact that it “does not save lives.” Palliative care recognizes something equally important: recognizing the value of the person. I urge all those who, under whatever title, are involved in the field of palliative care, to practice this duty of conserving the spirit of service in its fulness and recalling that all medical knowledge is truly science, in its most noble sense, only if it finds its place as a help in view of the good of man, a good that is never achieved by going “against” his life and dignity. 

It is this capacity for service to the life and dignity of the sick, even when they are old, that is the measure of the true progress of medicine, and of all society. I repeat the appeal of Saint John Paul II: “Respect, protect, love and serve life, every human life! Only in this direction will you find justice, development, true freedom, peace and happiness!” (ibid., 5).
It is my hope that you will continue your studies and your research, that the work of the promotion and defence of life might be ever more efficacious and fruitful. May the Virgin Mother, the Mother of life, assist you and may my Benediction accompany you. Please, do not forget to pray for me. Thank you!