Business Week has just published a response to my recent essay, Confessions of a Genetic Outlaw(which Rob graciously brought to your attention a few weeks ago). In this response, "New Hope for Families with Genetic Risk", Rosie Barnes, the chief executive of the Cystic Fibrosis Trust, explains:
. . . for those who do not want to bring another child with CF into the world and for whom a termination is unacceptable, pre-implantation diagnosis offers a positive way forward. Until recently it was only technically possible for those who carried the most common CF mutation (more than 1,200 mutations have been identified to date) and some couples could not take advantage of it.
This new technique has changed all that. By identifying a CF-affected gene without having to identify the specific mutation, all couples who know they are at risk of having a child with CF can consider pre-implantation diagnosis.
Again, there have been hostile voices, accusations of "playing God" or creating "designer babies." However, we are not trying to create exceptionally beautiful children, very talented children, or any sort of "super" baby. We are simply trying to ensure that this child makes healthy mucus like most of the rest of us and doesn't have to face a life of constant treatment, clogged airways, and a shortened life expectancy.
Alleviating human misery lies behind a lot of medical research. We try to cure the common cold. We develop vaccines. We attempt to second guess and outwit cancer. Are we redesigning human beings or playing God in those cases? As a practical measure to give families who usually already have one child with CF the option of sparing another child the same condition, this development is to be warmly welcomed.
The trouble I have with this argument is that this pre-implantation selection is not, in fact, ensuring that "this child" makes healthy mucus, and it doesn't spare "another child the same condition." The child that's being selected out isn't being spared the condition, it's being "spared" experiencing the difficult life it would have with the condition; it's being spared the experience of life, period. It may ensure that the embryo the parents do decide to bring to term will not have that condition, but it doesn't help the embryo that was diagnosed.
I do have enormous sympathy for parents wanting to make use of these new technologies to spare themselves and their children suffering. As I explain in my essay, I know that most of these parents are not trying to create perfect super babies. But I'm afraid there are two especially pernicious consequences to doing more and more of this refined weeding out of the "imperfections" that we're getting so good at identifying earlier and earlier. First, we're sending a strong message to people currently living with those same conditions that we do not truly believe they are worth the expense and the trouble it takes to integrate them into our lives. Second, we are making it more and more difficult for those of us who are convinced that God's image is revealed equally in the "imperfections" and in the suffering of those dealing with imperfections to justify NOT doing the same kind of weeding.
Lisa
Friday, July 28, 2006
I realize Rob is this group's music and dance critic, but here is a rather touching story from the Boston Globe about the last four Shakers left in the world and the estate planning they're doing.
Lisa
Thursday, July 27, 2006
Today's NYT reports
After months of fevered lobbying and bitter debate, the Chicago City Council passed a groundbreaking ordinance yesterday requiring “big box” stores, like Wal-Mart and Home Depot, to pay a minimum wage of $10 an hour by 2010, along with at least $3 an hour worth of benefits.
Regardless of where you stand on the US Conference of Catholic Bishops' support for an increase in the minimum wage, won't this be a fascinating experiment to watch? If this withstands the threat of Mayor Daley's veto and legal challenges by retailers, it might be a municipal "laboratory for reform" that could test the competing arguments. Again from the NYT article:
With this ordinance, Chicago has opened a contentious front in the growing national movement, led by labor and poverty groups, to raise the incomes of bottom-rung workers through local minimum wage and “living wage” legislation. Some economists say such measures will stifle development and deprive consumers of access to cheap goods, but many poverty experts say that local efforts elsewhere to raise wages have not choked off growth and that the expanding, low-paying retail sector can be safely pressed to raise pay.
“We’re very confident that retailers want and need to be in Chicago, and the question for the city is what kinds of jobs they will bring,” said Annette Bernhardt of the Brennan Center for Justice at the New York University Law School, which helped draft the Chicago bill and has done economic studies of its likely impact.
I also think the federalism/subsidarity angle to this debate is interesting. Again from the NYT article:
The drive to raise state and city minimum wages has grown out of frustration with Congress, which has left the federal minimum wage at $5.15 an hour since 1997. At least 22 states have enacted somewhat higher minimum wage laws.
San Francisco; Albuquerque; Santa Fe, N.M.; and Washington have across-the-board minimum wage ordinances for all but the smallest businesses. Those in San Francisco and Santa Fe have set levels near that in the Chicago bill without driving out retailers, Ms. Bernhardt said.
In the area of the law more familiar to me, predatory lending, the municipal and state attempts to impose tighter restrictions on certain predatory lending practices than exist at the federal level are almost invariably preempted by federal banking law. I'm currently trying to work through whether principles of subsidiarity might be helpful in thinking about this issues. It might be interesting to watch what happens to these municiple minimum wage ordinances through that lens as well.
Lisa
Tom's question about CST's concern for the potential social effects of large inherited wealth, particularly "effects such as increased inequality in life opportunities and starting points (which differs from inequality in outcomes) and the potential for increased stratification and a less fluid society" seems to me to be key to answering Rob's initial question about the estate tax:
can we agree that the existence of the estate tax -- putting aside questions of rate, when it kicks in, etc. -- is supported by CST, and perhaps more strongly, that its elimination would be condemned by CST?
When Fr. Ken Himes gave his wonderful introduction to CST to those of us gathered at Fordham this past June, he told us that among the foundational principles underlying CST is an understanding of equality not as strict equality, but rather as relative equality. He cited people like Pope Paul VI and John Ryan as developing this notion that there are ceilings to what's acceptable in terms of accumulation of wealth, just as there are floors to what's acceptable in terms of poverty levels. When the inequality between those at the top and those on the bottom becomes too severe, it endangers the bonds of community that hold us together. As I understood this idea, those with too much wealth are in just as much danger of losing the bonds of community, of dropping out of the "human family," as those with too little wealth.
If I am understanding this idea of "relative equality" correctly, and if Himes is right in suggesting that this is foundational for CST, doesn't that provide general support for at least the existence of an estate tax, even if the details of it have to be filtered through all the competing claims of prudential considerations like what the effect will be on family farms, whether we should just let Bill Gates & Warren Buffet funnel things back to the community however they want to do it, and whether Paris Hilton has entirely dropped out of the human family?
Lisa
Wednesday, July 26, 2006
An office-supply company just came out with a survey showing that about 43 % of office workers work on vacation, up from 23% in 1995. 41% of the workers surveyed said it was their laptop computers that helped them do this. On top of all that working on vacation, the survey found that only 61% even use all the vacation time they have coming to them.
This might be too incendiary (or hypocritical) a suggestion to make on a blog, but I can't help but think that this has to be one of the major contributors to the breakdown of the family. I speak as someone who is finding herself having more and more difficulty resisting the siren call of the Internet, both on vacations and even during evenings at home. Sure, now I can be in the same room with my kids while I'm checking my e-mails, with The Wiggles singing and dancing in the background, but I'm not singing and dancing with my kids. (Of course, that might just be the effect of age, or of just being sick to death of the jingles of those four goofy Australians and their irritating furry friends, rather than the fact that I'm working on my laptop.)
I recently met a school psychologist, and asked her what the major problem was that she was seeing in elementary school kids these days. She said it was anger. Could our kids be getting mad because we are all spending less and less time giving them our total, undivided attention, even when we're not at work?
Lisa
